[POST] UCLA ECPHP

This week has been really hard on J. He's still our "sunshine boy" and smiles and sings, but he has been having a rough time saying goodbyes. When we had visitors he would not want to say goodbye to them, and then he would cry after goodbyes were said.

I think it's because he remembers his goodbye party at UCLA, where he refused to hug anyone and would not say goodbye to anyone, and he began crying at the end. He knew that this goodbye party was for him and that when they sang the goodbye song, it would be the last time he'd hear it. He grabbed the picture that his teachers made for him and wouldn't let go of the picture, and he didn't stop crying until we exited the medical school and went onto the grassy courtyard.

When I was at UCLA, I had been looking forward to "being back in my home office," which had been a safety zone for me. At the beginning I struggled with passing my 30 hour weeks "away from home." But I'd grown used to my time at UCLA and time flies when I find camaraderie with the parents who were there in the parent lounge, passing the hours until we can go to the 7th floor at the end of our children's days. Now I feel a bit strange in my home office, missing people that I can chat with. I'm an introvert and I'm surprised that I miss being with people! (Maybe I'm an extravert trapped in an introvert's mindset.) I miss Cafe Med's chicken tortilla soup, which seems to be on the menu almost every single day of the week.

One of the things I'd done for J is to take some photos of the classroom and of his teachers and the staff, and putting those photos in an album for him to look at. One of his classmates has a YouTube video series and I let J watch the same videos for as many times as he wants, because I know he misses his classmate. They've been paired as peers and J has grown used to playing with him and learning with him.

I'm using this week primarily to finalize J's schedule for our home ABA program, securing a place for him at the private preschool we're looking to enroll him for the Fall, and cleaning the enormous clutter of paper that's accumulated on my desk these past 10 weeks. Right now I'm down to two 5-inch piles of paper on my desk, down from four piles. Somehow, during these short few months at ECPHP, we've managed to "settle" with the school district, get J eligible as a client of the regional center, and find a (typical) preschool we feel is going to be a good environment for him. I feel really good about how things are unfolding for our family after a rocky, difficult few months post-diagnosis.

I created an educational "portal" for J's therapists, so everyone can be on the same page when it comes to J's goals and progress and teaching strategies. UCLA has been so amazing because everyone talks with each other and there is a central contact person (the amazing Dr. K). Now I get to be that "coordinator" and it is not an easy job. I am not sure how well this portal idea will work out, but at least it helps me see the big picture of J's care and education.

We started our home ABA program this week. It has been a rough acclimation period for both J and me. I need to take a deep breath. Maybe this is my introvert side coming out. So many new people in the house. Watching J get anxious and fearful. Knowing he's been through a lot as our kiddos all have been through a lot. Feeling helpless as a parent when I watch him cry. Knowing he's tired. Feeling tired myself (yet managing to get insomnia every night since we left UCLA.) I know: I'm taking this all too hard, too quickly. It's too early to tell. So I shouldn't try to "make some story to tell myself."

It's really, really hard NOT to compare ABA therapists from agencies with UCLA teachers, but I think it is better for our mental health not to, because honestly, there is "no" comparison. ABA agencies are not "center-based" but "home-based" and therefore, we have to become the points of contacts for all the professionals working with our children. UCLA ECPHP is "center-based" and as a matter of rule, all the team members working with the same child have to talk with each other and this creates the seamless level of care (translation: visible results in record-breaking time.)

On the bright side, we visited with the director of the preschool that we plan to enroll J late August. Meeting with her has been a highlight of our week. I asked her why she wants J to be in her preschool. There is a waiting list and she has no shortage of "inclusion-need" children to select. Why J? Without skipping a beat, the director said, "I see his potential! I want him! Who wouldn't want to work with him?!" She made my husband tear up.

**************

My friend in Australia sent me this email over the weekend:

I felt a bit ironic reading this because right after my empowered feeling ending UCLA I felt awful these 2 weeks after, as new people started coming into and out of our home. We've always had J "go out" to a center (school, clinic, etc.) People coming into and out of our home is taking a lot of getting used to, especially for me (the introvert.)

But this dream and email reminded me that I'm probably feeling the same "beginner's nerves" now, with this new leg of the journey, much like I felt nervous when we started with UCLA. It feels a bit like starting high school, then starting college, then starting graduate school. Each step brings new anxiety as I wonder, "how am I going to do this" then I will settle into it. Then I acclimate, graduate, and give a speech LOL.

There is often a very long (months even more than a year) waiting list for ECPHP, but a key factor is insurance coverage of the program. Insurance companies have Utilization review committees that vote aye or nay to treatment decisions, including in-patient services and hospitalizations. Even though ECPHP is "partial hospitalization", insurance companies may still classify these as "hospitalization". This means it is NOT uncommon or unusual for insurance companies to require prior authorizations (also called pre-certifications) every week / every 5 days. These committees have to base their decision-making process based on their clinical policies, and these policies are usually published online.

For example, we use Healthnet/MHN. Their clinical policy list is here. (You need to click on the autism diagnosis and treatment link under "A" and the PDF file will pop up.) When I first applied to ECPHP I sent the program administrator (A. Y.) a copy of the clinical policy on ASD treatment in case the physicians need it to look at how the insurance makes decisions on coverage specific treatments. When you download the autism dx/trx clinical policy, you should also find the list of all the CPT codes you need to know for insurance reimbursement/superbills.

This was a major point of stress for me, since I suck at cooking and anything remotely related to party-planning. I was looking at Subway, which caters, but after reading some Yelp reviews I decided to go with Corner Bakery on Westwood. It's a bit more expensive, and if I had tried the local Subway I may go with personal experience over what I'd read on Yelp. I did all the ordering online. I bought bottled water, however, because I refused to pay more than a buck per bottled water even if it's catered!

We invited J's psychologist, ABA agency (especially the agency director & supervisor who would be in charge of programming goals) and the director of the private preschool we plan to enroll J in the fall.

The goal for us with the case conference was multivariate:

1. where did J start, where is he now (progress)
2. what is the most appropriate educational placement for him?
3. what is the most appropriate intervention moving forward?
4. how do we create the environment for him to be successful post-UCLA?

Our case conference went incredibly well and I'd mark it as a major success because:

1. We were affirmed on the educational placement we felt was appropriate (typical peer setting with trained aide) for our child. The preschool director walked away from that case conference WANTING J BADLY at her school. She has a waiting list and she told us she is saving a spot for him and not to worry; she went out of her way to answer our questions/concerns.
2. We changed our mind about the importance of social / peer interactions. Before UCLA ECPHP I was not enthusiastic about socialization for J. First of all, peers make him anxious, and as a mom, I tend to avoid situations that make J anxious. The correlation between improved symbolic play/joint attention skills and improved language, I understand. But as an introvert, I have all sorts of reasons why I discount the "need" for young children to be "socialized." However, at the case conference, when we heard Dr. K discuss J's improvement with social skills, I reconsidered. We realized that continuing social peer exposure is a critical component to J's language development, which made my husband and I think about the need for a social / play skills "group." Note: we are still addressing this (translation: I'm working on it!) 2 weeks post-UCLA.
3. I appreciated the mantra of "it takes a village" more than ever when it comes to helping our child succeed. If J did so well, it wasn't because of only what we parents did but also the entire "ecosystem" of therapy & support we had created for our child, including support system for me (I cannot emphasize enough how much support I need to keep myself sane and together...)

I went to a "ECPHP moms' night out" on Thursday. It was nice to see many familiar faces there; even nicer to be remembered! Some of the moms and I were talking about accepting and grieving, and how long it took us to come to accept that our children have autism.

I think I accepted it quickly. (All right, I'm not talking about the few times when the school district and regional center were messing with my head.) Considering we're not even a year out from date of "diagnosis," I'd say that I had accepted the diagnosis even before we got the official diagnosis. I only needed a trusted professional to confirm what I'd begun to suspect. Acceptance came to me because the diagnosis answered a lot of questions about why my child struggled: why he wasn't talking, why he was very sensitive to certain sounds/stimuli, why I somehow knew not to look at his eyes to reduce possibility of a tantrum... (the only difference was, when I didn't know about autism, I used rationalizations: he's a late talker, he's overly sensitive, etc.)

Plus, I had no time for denial. I was in battle-mode. I was fighting for services, I was fighting the school district, I was fighting for so called "experts" to believe me. I was playing general and foot soldier and medic and intelligence officer all at the same time. I worked off adrenaline. I raced against time.

Still. Even when I've accepted it, I don't feel like I've 'moved on.' I still feel like my life stopped at a particular moment. That moment when the pieces of a puzzle fell into place while my old world broke into pieces. That moment when I knew I would stop reading those writing books on the shelf. These are moments of me not yet moving on.

I've tried picking out one of the books to read, and it's been slow. I hauled one of those books during my 10 weeks at UCLA and ended up reading none of the pages, I just hauled that book around. But hauling the book around is progress; it is progress compared to ignoring the book completely. Progress. That's what I can hope for on my path to Peace. I know it takes time and there isn't a specific schedule I "should be moving on." Maybe this is how I have matured: I am able to give myself the room I need to process grief at my own pace.

We're one month out since UCLA ECPHP and the home ABA program is not going well. For the past 2 weeks I've not slept well and I feel neurotic about everything in J's programming. Why? Because I feel like the way the home ABA program is progressing, J's "unlearning" some of the skills he's gained at ECPHP, plus he is exhibiting new behaviors that were not there before (and I'm not talking about good behaviors.)

Now, I've attended enough parent support group meetings to know to "expect" some level of regression, or what looks like regression, once the child leaves ECPHP. We can even say "maybe it's because now he is learning harder skills." We are the type of parents who will "build in" some element of "failing" in these initial stages. I know that it is not fair to use ECPHP teachers as a measuring stick (although it is scary to not expect this, because we are entrusting our child to a therapist, and why shouldn't we expect each therapist to be the best.) But I honestly don't think the program supervisor is doing an appropriate job supervising J's programming.

Then there is the issue of "what kind of ABA." I remember when I was at ECPHP, I asked Dr. Tanya about the different kinds of ABA. You have your DTT style, PRT, VB, RDI, Floortime... along a spectrum of "ABA" interventions. I've always believed that J needs an element of DTT, especially for new skills that are difficult for him. For example, anything relating to language probably needs some form of DTT at the beginning. But when it comes to testing skills? I am hands down, ANTI- "Mass Trials" format for J. I've never seen mass trials in action until J's home programming started. Now I hate it with a passion. And I mean, I. HATE. IT.

If you're unfamiliar with mass trials, it sounds like this:

This is how I feel listening to the "mass trial" format of ABA.

I've heard ~120 hours of "mass trial" format in J's home programming over the last 4 weeks, and I have come close many times wanting to bust into the room and telling the therapist that she needs to kindly leave my house immediately. It is the most annoying way to test a child, especially this child.

I asked some of my contacts I trust, including an ABA therapist that we hired to privately work with J for about 5 months, and the consensus I'm hearing is that mass trial formats don't work well for children like J (i.e. he is not severely impaired.) Even from parents of children who are moderately impaired, their children do not respond well to mass trial format. I can't blame these kids mass trial format of questioning is @#\$#%#@ ANNOYING.

I gave them a child who came out of ECPHP brimming with enthusiasm for learning, whose echolalia was largely extinguished by the UCLA team. They took this child and in 4 weeks reinforced his non-compliance and task avoidance behaviors, taught him that hitting is what gets him out of doing hard stuff, and brought back his echolalia. How can we blame J for becoming echolalic over these weeks? J is confused why the hell he is repeatedly asked the same questions. In a single week, he was asked his name 25 times via mass trials. In a 2-week period, he was asked when his birthday is 50 times. He *mastered* these at ECPHP. Guess what? Now he is unlearning his birthday and gives the wrong answer.

In many of the mass trials data that I've looked at and scrutinized, I see a disturbing pattern: J gets 100% correct then he starts making mistakes. It's not because he hasn't mastered the target skill. It's because he's interpreting being asked the same questions over and over again as he must not have given the right answer so he starts trying something he knows: he repeats what he hears.

So, we are about 4 days away from firing the agency (I've already fired the AM therapist, given that she's taught J that the best way to get out of learning demands is to hit.) I need to pull myself together to remain cordial. Because if I really speak my mind, here's what I'd ask the agency directors:

You keep telling me that my kid is smart. I *know* my kid is smart. So why are your therapists teaching him like he isn't?

The month of May was tough on me emotionally, for many reasons, one of which was the negative experience we had with a behavior agency we first chose. J was quite miserable for the month of May. We switched agencies and I am very happy with our current agency. Their people are well-trained and personable. I also liked that our lead instructor has 10 years of experience, and within the first week both the supervisor and the agency's lead trainer each came on 2 separate occasions to "overlap" with each instructor who's working with J.

But also. I was at an emotionally low point because I wasn't thinking about my dreams anymore. It is easy to lose myself in circumstances when stakes are high. Somewhere along the way I bought into the power of circumstances. Suddenly I stopped looking forward to my own life. I stopped dreaming about what I wanted to do with my life. It wasn't that I had a good idea of what I wanted to do... I never had a firm grasp of what I was supposed to do with my life. But that was why I kept searching, kept asking questions, kept on keeping on. Along the way I embarked upon fantastic adventures and created some meaning and success for myself along the way. I made a difference to a few people; I liked doing that.

But then I stopped asking or searching, because my search no longer felt important. I wasn't feeling despair. There were times when I felt confused how this was my life, this all feels so foreign to me, even though I have practically lived and breathed autism information since October 2011. I was dealing with so many things that felt so critical, like if I screwed one thing up it could affect my child's life for the rest of his life. In my quieter moments I challenged this belief, but I had been operating on this belief full force since October.

I had stopped wanting to create any adventures. These adventures of life seem such frivolous pursuit because "goddamit autism is so serious!" But then I look at my little boy and life is a total adventure for him. He endures the evaluations and assessments and endless scrutiny from a parade of professionals trying to give him a score and treat that score so he can get a better score. Meanwhile he knows how to enjoy, he knows joy, he is joy.

That's when I ask myself: Who is the victim here? Because this little child does not act like a victim and does not think like a victim. He is happy and at peace with himself. Isn't that what I seek for him? Why am I seeking for him what he has never lost?

I have moments of clarity when I see so clearly my son's strengths, I can see many possibilities that await him in the future. Then I have moments when I get upset because he is scripting (delayed echolalia) and I go online to look for articles on delayed echolalia and how I should feel about it. The truth is, I already know what I'm looking for. Whenever I go online, I'm looking for camaraderie from parents who believe, as I believe, that autism is not a disease or a defect to be cured of or fixed.

I don't believe in doing nothing that is as silly as me "accepting depression in totality" and let it consume me when it debilitated me. I never "lost" my child to autism since he was born with it, and I subscribe to a genetic explanation of autism. I see him needing to learn how to learn, so he can become educated (knowledge is power) and he needs to learn how to communicate with "people in general" because he needs to live among them. I expect ABA programming to help him acquire the type of skills he will need to navigate his environment independently. Like learning how to drive. You can get by without ever learning to drive but knowing how to drive offers you many more options than if you only walked or take the bus to get somewhere.

This isn't some romantic conflict of "what my head says versus what my heart says." My head has been very useful and logical when it comes to observing my child and the way aspects of autism "shows up" in him. Like scripting. He scripts because he doesn't know the answer, and he wants to give you an answer because he wants to remain engaged. He scripts because he doesn't know what you're talking about, and he wants to respond because he wants to remain engaged. He scripts because he feels anxious, and he wants to run away but he can't or won't and so he scripts to manage his anxiety/fear. He scripts because he likes the way it feels, the sound of his voice and how he is able to mimic so perfectly the pitch and tone and rhythm of a sentence.

From my heady logic, scripting is a useful tool and a clever way to exert control for a small person who is wholly dependent on everyone else. Not to mention self-entertaining. Not to mention the probable making of a performer. I used to script, but no one was around to hear me since I was left alone for quite a good bit of time when I was a very young child. Or I learned to internalize the scripting (silently.) For me it was entertaining. I liked hearing my voice playing these different characters. I'm not autistic (...I think). But I liked to "script"!

Once I went to a talk by an "ECPHP alumni", a boy who was in the program 10+ years ago and who is now a teenager. Someone asked him how he feels about autism. He said the world needs different ways of looking at things and what is wrong with that, don't we want all different ways of looking at things? That was when I slid behind a sofa to wipe the tears that wouldn't stop falling out of my eyes. Because I know "people in general" do not want all different ways of looking at things. "People in general" want the same way of looking at things. They want conformity.

Sometimes I feel like I'm in the minority of parents. There's just a lot of pressure about what I'm "supposed" to do for the good of my child. Much of this pressure is to get my child to "look the same" as the other children.

I've been trying to motivate myself to do various things, and I'm just not motivated. But this is so unlike me, I think to myself, this isn't me not to keep busy. Then I realize that "keeping busy" is not really me. Keeping busy has always been my way of escaping pain. What kind of pain, though, it's harder to say. I've lived with some type of existential pain ("why am I here, what am I supposed to do with my life") for a long time way before I became a mother, a wife, a career professional. I'd think I'd have gotten used to this by now, having "lived with it" all my life but no I have not gotten used to this!

I look at the books I still want to read. Every month I get new literary magazines in the mail, from last year when I subscribed to a whole series of them. At least I no longer immediately file the magazines onto the shelf and avoid looking at them. Now I will look for a story that will grab my eye.

I feel tired. Physically, because I haven't slept well since 2008. Emotionally, because... well, isn't it obvious. Keeping busy takes energy and motivating myself takes energy, too. Maybe I don't have much more energy to give.

I'm negotiating with myself:

Before I learned that I was a "special needs" parent, I paid close attention to the way I'd teach my child "approval" behaviors. I come from a culture where "Tiger Parenting" is best practice, you are supposed to put your children down, compare them to everyone else's children, tell your children why they suck because they aren't as smart as other people's children all in the name of "motivating" them. I saw how this screwed up my self-perception, how I learned to never feel good enough regardless of my achievements. It was always the next big chase, the next goal to attain, the next test to ace, the next person I must impress because otherwise my existence had no value.

In 2006, I wrote a post on emotional manipulation on my mental health website (the one I created in 1998 because I decided I should not be ashamed to suffer from clinical depression, that it wasn't my character weakness or some moral failing to succumb to this condition.) I described one of the conversations I had with my mother and how I dealt with it. I didn't realize that post would gather a life of its own with over 150 comments over the years. These aren't short or trivial comments: these are heartbreaking and frightening stories of how young children growing up on a highly manipulative approval system become deeply traumatized adults who struggle daily to find value in their lives when the persons they love the most (parents) keep putting them down.

This has led to my hypersensitivity to inadvertently trapping my kid into an addiction to approval. I was very careful about not saying to him, "you're so smart!" or "good job!" when he did something right. I never liked "good job" for children or adults because it's vague and is more of an approval system one person gives the approval, the other person gains it. However, I praise specifics. It leads to weird & awkward statements like, "good saying that big sentence," or "I liked how you did {an action}." I do want to praise effort but not put all the focus on results." I learned this from talks given by Kim John Payne on simplicity parenting, where "good jobbing" is a widespread malpractice of parents.

I want my kid to feel proud of his own effort, independent of other people's approval including mine. I do want him to want my approval (it makes for a productive parent-child relationship when this is constructive) but I don't want him to believe "I have to XYZ in order for me to be OK, to be lovable, for mommy to love me." I want something more like this: "Mommy loves me. Look, mommy look what I can do!"

Still, I can't help but notice how often J's teachers tell him, "you're so smart!" I agree with them, of course, he really is smart. But it bothered me when I hear them say it, because of research that Po Bronson cited in his book, Nutureshock, where he linked children's belief in them being smart to the same children more likely to cheat in order to keep appearing smart and not make mistakes/failing (myth of praise.) Even when J was at ECPHP, I routinely hear J's instructors say "you are so smart!" And it bugged me then, too.

I found myself an insomniac (again) last night, fretting over my lack of producing results on the career & business front, facing the familiar existential discomfort that plagues me like a dental tartar. I came down to the kitchen and pulled out one of the books from one of the "shelves that marked the stoppage of time" (i.e. pre- and post-autism diagnosis.) It was The Best American Essays 2006. One of the essays gave me the answer to win this round of my existential boxing:

From "A Matter of Life and Death" written by Marjorie Williams who died of liver cancer in 2005.

I'm sitting waiting for J's phonics class to finish and I have to rest my arms on my purse because my armpits feel like they are on fire. Earlier in the afternoon when J went to the "Party City" store with his dad I decided in lieu of taking a nap I should instead apply hot wax to my armpit and yank entire hairs from their roots. Did you know that this causes your armpit to bleed. Apparently, the hairs are alive and by pulling live hairs by the bushels away from capillaries supplying them with the elixir of life I cause the follicles to bleed. And now I feel like my armpit is on fire and it's just the right armpit because I can only take blinding intense pain one armpit at a time.

I try to blow on my armpit but it's hard to be subtle about it. Thank God no one else is waiting in these chairs next to me while I wait for my kid to finish working with his teacher, or they'd complain about "that woman who keeps smelling her armpit what is wrong with her."

You see this all came about because I wanted to look acceptable when I wear a short-sleeved shirt for the summer. And I happen to have a lot of hair, I mean, be hairy. And I'm trying not to "let myself go" just because I'm a mom. Now I'm bleary eyed because I should have taken that nap and my armpit feels like it's on fire. But hey my kid wrote the word "bee" with his teacher's help.

I find it strange that celebrities* who garnered fame and fortune by differentiating themselves from "normal people" work so hard to make their special needs children look as undifferentiated ("typical") as possible and then some use that celebrity platform to blame a complex genetics basis of difference on a scapegoat real or imagined.

I find it strange that this western society so smitten with the "self-esteem" movement is rife with mind-boggling amounts of ways to change, fix, cure, improve, upgrade, downsize, and otherwise make oneself "anything but oneself and how this begins so early in one's childhood.

I find it strange that "interpersonal skills" and "communication skills" are billion dollar industries and this society still trips over the slightest differences in how people relate to each other and communicate with each other.

But you're right. There is no money in accepting. All the money is in fixing.

*Holly Robinson Peete is one of those celebrities who is using her platform in an excellent way: ""This is my son Rodney. He has Autism': Holly Peete confronts 50 Cent over cruel Twitter jibe about special needs children"

I am sitting at Interim Cafe waiting for J because he is in speech therapy; after speech he will be in group speech or "social group" and I got out my book and pen because Hank Williams' "Hey Good Lookin" started playing and it made me feel a glimpse of how I felt when I was a little girl and I was listening to my parents' mixed music tapes. And it is a bizarre feeling: to be able to remember how I was once a little person and at the same time know I'm now a big (and older) person with her little person, and how her little person has his own feelings quite separate from her feelings and that one day he may recall the same day the way she was recalling her days past. Then knowing one day she will be long dead, and someone may be reading her words in her notebook and saying, "Man! This girl writes a whole lot about nothing!"

Now the cafe is playing "Route 66" reminding me of my angst-ridden college-age self and how I was cynical at the world and at the same time

The "right" therapy team makes ALL the difference in how I'm feeling about our post-ECPHP journey! (How I'm feeling is based almost entirely on how J is doing and growing.)

We recently switched ABA agency and I am impressed with J's ABA team:

• The program supervisor demonstrates good communication. She is proactive in asking me how I'm feeling the programs are going, whether I have questions about what I'm observing (or hearing; I do most audio-observations rather than being in the same room when J is receiving instruction,) and she has conducted many "overlaps" where she observes each instructor working with J.
• The agency's lead trainer has visited several times within the first two weeks, addressing new behaviors that emerged when we were with a different agency (where J has learned that a great way to get out of task demands is to hit the instructors and then be placed in a 10 minute "time out.") The lead trainer expressed her excitement working with J and she was sincere and specific about why she was excited about what she was seeing ("because I can see that he is learning very quickly what will and won't work!")
• The instructors like J. I know this sounds weird and something we parents think we should take for granted. Shouldn't we expect that the people working with our kids *like* our kids? Yes and no. It's like expecting a teacher to like the kids s/he teaches. Ideally this happens, but sometimes people don't have that chemistry. Fortunately, each of the 3 instructors working with J seem to like him and they behave in a way that is consistent with them caring about him.

All this means that I, the parent, can focus on the "parent" part of my job and not have to pretend to be a therapist.

Maybe this is what gurus mean when they say, "when the student is ready, the teacher appears." Recently I've made a couple of decisions:

Maybe this is what gurus mean when they say, "when the student is ready, the teacher appears."

Recently I've made a couple of decisions:

First, I decided that autism isn't going to "define" my life, because I was allowing the label of "autism parenting" be my excuse of not thinking forward or caring about my dreams, or feeling like I don't have a right to have dreams when my child's future is at stake (because my black-and-white reasoning is saying "you can't have both.") I am who I am, intact and whole, with my dreams and aspirations, and I also am a parent of a child on the spectrum who needs a lot of my time and attention.

I even changed the category for posts like these, from "autism parenting" to "parenting" because I believe our challenges may be very different but our heart as parents remain very similar.

Second, I decided to surround myself with more like-minded people. Parents who are spending a lot of their energy on ways to connect with their child and even more energy "accepting" their child, while at the same time, giving their children the tools and skills needed to maximize their potential in life. These parents have gone past the mindset of "they must blend in a certain way, or else." I think it's because I'm arriving at this point I can't say I'm quite past it, but I find myself arriving at this point in my journey as a parent.

This morning I read a couple of blog posts that made me feel really good, because they made complete sense to me and exemplified "uncommon sense that should be common sense." The first is a blog I've started following recently by Ariane Zurcher, where she described how she interacted with her daughter for 20 minutes following her daughter's lead and interests and being present with her child. The second came from Thaddeus Howze, where he described how he changed his perception about his son and his child's ability to learn, and by looking at his child and their journey together through fresh eyes, he changed his life.

Both parents have children older than mine, and I see these parents a bit like the way a freshman in high school will look at a junior or senior. Sometimes I wonder, "will I ever get there?" I like knowing I have like-minded companions.

In phonics class waiting for J.

He is telling his phonics teacher about the ball machine and how it's covered. J has a fascination for ball machines and whether or not the machine was on/off (the one in a nearby park is covered in blue tarp when it's not in use.) Mr. Alex doesn't understand what J's talking about but asks him a question to try to make sense of what J is communicating. J doesn't get what Mr. Alex is talking about either, and says yes (his standard answer when he's confused.) Both are somewhat confused yet what I see (and hear) is that J and Mr. Alex want to continue connecting.

Which makes me wonder. What makes communication and connection?

Content or intent? From what I see, content is minor. Intent keeps the connection alive. The intent to communicate is why J likes his phonics teacher even as I'm still wondering what he's getting out of phonics instruction.

J went to a birthday party at a local "Little Gym" venue. He loved playing on the equipment and was really happy.

The person in charge (Little Gym employee) got all the kids together in circle time. J did well and participated, answering the usual intro questions like stating his name and what was his favorite ice cream flavor.

Then they started blasting the music. And I mean BLAST! The volume made a few of the younger children cry, and an older (typical) child even covered his ears and said "it hurts my ears!"

As if that wasn't bad enough...

The person in charge did this "slam the cheese" game where each child was supposed to run and smash against this large wedge-shaped mat, causing the mat to fall hard against the floor mat. This creates and a gun-shot-loud-BOOM! sound.

Well, it went downhill from there for J. We had to take J outside the class area because he couldn't stop crying, he was so frightened by the initial explosion of sound of "cheese" shaped mat slapping hard against the floor-mats.

What's the deal with these kiddie gym places and blasting music to deafening volumes? Is this supposed to make kids think it's more fun? Or do they think this stimulates the kids? The volume was overwhelming even for us adults. [by the way, you make the event more fun by being an effective & fun instructor, not by blasting music to inner-ear-cell-damaging decibels.]

My husband took J completely outside the Little Gym venue so J could compose himself and calm down, but it seemed like J would calm down a bit then any little thing sets him off crying again. The birthday kid's dad, who is my husband's coworker of almost 20 years, knew about J's issues and went out of his way to try to help J get comfortable again after the scare, but it took J close to an hour before he would stop crying and be able to join the crowd for eating cake.

Afterward, we went back to the birthday kid's house and J had a really good time strumming the birthday kid's toy guitar so all-in-all, he had fun.

Our world has grown louder, and noise pollution is a serious problem! I'm not talking only about the effects of loud noise and noise pollution on our children, but even on us as adults in general. This level of noise isn't "normal," people! Louder doesn't make the event "more fun"!

For some reason I keep running across the word "fix" with parents of autistic children, and the usage of this word, "fix" with dutiful parenting.

I believe in teaching. I don't believe in fixing.

"Teaching" and "Fixing" are 2 very different words that appear to have similar actions. The main difference? Perspective of the parent toward the child.

Teaching helps me focus on skills I can help my child gain, wherever he is in his development, with everything he is.

Fixing makes me focus on all the "broken" things about my child. (Look at the word FIX you fix what's broken, so by using the word fix you immediately label the child as broken. Even if you don't, the child will learn to label himself/herself because this is how we end up projecting our judgments via behaviors toward our children. I've personally been one of those parents with the "fix" mindset, for about 2 weeks, and I HATED the kind of parent I was and how I felt toward my kid. I am supposed to be my child's Safe Person.)

I expect my child to realize he is different and my spouse and I fully intend on teaching our child his difference and how he can learn to navigate, and in certain areas, leverage his difference to improve his quality of life.

I don't want my child to feel like I see him as broken, because I know how it feels to never be good enough no matter what I do. If this perception is based on my genetic make-up and brain wiring, well, there's not much I can do about my genes and the way I process the world.

Children are very sensitive. They can tell how their parents feel about them and judge them.

Yet this is hard to explain as a parent: That I think even if my child can "shed" a medical diagnosis of autism by blending into a particular social phenotype, just as I can go to a medical professional right now and be told that I've appeared to have "shed" a medical diagnosis of depression my child cannot "stop" having autism or being genotypically autistic, just as I cannot "stop" having depression genes or being genotypically depressive. This is the way I process the world and how I "fit into" the world with my brain. This is the way my child processes the world and how he "fits into" the world with his brain.

A lot of what we're doing in terms of treatment approach is based on our long term goals for our child: maximizing his ability to be a self-reliant, contributing member of society. Based on this very specific goal (and notice how it doesn't say anything about him shedding an autism diagnosis let alone "being cured of" autism) we have short term goals, like teaching him the skills he needs toward 1) being a self-reliant 2) contributing member 3) of society. Our goals will be revisited and adjusted as we continue to learn about our child.

Sometimes I feel like there is no "parent group" I can truly feel comfortable around.

I can see how some will say, "well sure you can say that, because your child is {higher functioning}, you don't know what we deal with, if you were me why wouldn't you do everything you can to help your child?"

This is true, I only know about my family. I never experienced the anguish of seeing my child "withdraw" from me and becoming silent, because my child started out mostly silent until past age 3 and even then, I didn't hear him call me mommy until he turned 4. He didn't regress. His hypersensitivity issues (to sounds, lights, people) came "standard" with all of him, out of the womb.

But I also know parents of children on the spectrum who exhibits more "visible" symptoms of autism (sensory issues, "stimming") and these parents practice "radical acceptance" at the same time they do their utmost to teach their children skills to maximize their potential.

I can see how some will say, "well sure you can say that, but my child is so {high functioning), if you were me why wouldn't you do everything you can to make your child typical?"

This is true, I can see how some will feel like their kids are so close to blending in, that if they only do XYZ then they will have a typical kid. I've had some parents tell me that my child looks so close to typical, they can't "tell" that he's on the spectrum. If anything I get more pressure with the fixing mentality because my child "looks so close" to typical. Why wouldn't I do everything I can to fix this?

Who said I am not doing everything I can? I am doing what we believe is appropriate by teaching my child at his level, where he is, with all that he is including the autistic aspect of him (this has to do with teaching methods & curriculum, paying attention to symptoms that can interfere with his learning, and being mindful of how he regulates his responses/anxiety to variety of stimuli). The only thing I'm leaving out, because I don't believe in it, is "...to fix this."

I choose not to cultivate the status of my relationship with my child as: "I'm your autism parent. You are my autistic child. We need to fix you and this is how I love you."

It is easy to say "but this is only for a few years, after this we won't need to be like this." I don't believe that. My child won't have the concept that "this is going to be our relationship for a few years then afterward we'll have a different kind of relationship, one that's more like other parent-child relationships."

My child will believe that this IS our relationship. In reality, the way I see and treat my child forms the basis of our relationship and everything we do moving forward adds to this foundational relationship between us.

I'm pretty sick of most of my conversations revolving around autism like it's some horrible disease of epidemic proportions requiring immediate fixing (sometimes, at all costs.)

Because honestly, I'm pretty sick of being an "autism parent."

[But here's something I'll never grow sick of: reading posts like https://www.stuartduncan.name/autism/the-life-i-once-had/and https://emmashopebook.com/2012/04/30/a-letter-to-you-who-wrote-i-wish-i-didnt-have-aspergers/.]

That moment when you realize child's behavior is changing function from task-avoidance to attention-seeking in the same tantrum and you think to yourself how you have to keep on your toes because your kid's figuring things out FAST.

The problem with "empathy" tests for autistic individuals is that in evaluations, the test-taker always get the short end of the bargain.

If you are the "test subject" (person being evaluated) and you give a stupid answer because you think the question is stupid (which it almost always will be, because it's hard to find the right question that gauges a qualitative aspect) your answer will not be interpreted by the people evaluating as "this test is so stupid, look at the answers we're getting."

Instead, your answer will be interpreted by the people evaluating as "this answer is so stupid, which means the person must also be stupid." They're not going to use the word stupid, of course, being social scientists... they will simply mark the person as "incapable." When enough of the same answer is given, it becomes a rule not an exception - suddenly you have entire groups of people labeled "incapable."

The reality is, people even many parents often cannot tell their children's capacity or ability. Unfortunately we rely on blunt instruments administered in a clinical ("objective") manner, because this is what we have available.

When something doesn't make sense, we aren't thinking about this, because we're looking for a response any response. If a child like aspiekid speaks up and say, "I don't understand this question's relevance," then it opens up a dialog with the researchers to maybe explain what they are looking for ("the way you'd answer, if maybe we can create some relevance or a story behind this, but I know what you mean tests sometimes look and sound like nonsense and part of this is because we don't know how to make a better test, can you bear with us?") without giving away what the test is trying to measure.

Although I can argue, what's wrong with giving away what the test is trying to measure? Let's say I'm gauging appropriate response. I can tell the "subject" (taking the test), "I'm looking for what you think is the right answer." If the answer is right, I haven't rigged the test or given the subject an unfair advantage. In fact I'd have a good idea of, "does this person know what is appropriate to situation?" If the answer is appropriate to situation, but the behavior is inappropriate, now I have my "gap." The gap is, "person knows the right response, person cannot deliver the right response what is holding person back from behaving according to knowledge of appropriate response?" Then I have something concrete to work with.

Then again... the problem with white coats as authority figures, children who are subject to evaluations and not all will speak up or are allowed to speak up in test situations... hence, we parents play a critical role of gauging from observation whether our children has that capacity, then we become the ones who bridge that gap.

In the same vein, we have many autistic researchers working in various disciplines today, including social science. Given the low hanging fruit of opportunity for changing the way we draw conclusions about autistics' ability for various forms of communication and social perception (including "empathy") is there any effort anywhere by anyone to create a more reflective approach to gauging "empathy" and communication for autistic individuals?

Isn't this one of the most effective ways to advocate for those with autism - to change the perception of autistic people's capacities and abilities - by making a BETTER TEST? I call upon the diversity of autistic self-advocates: COME UP WITH A BETTER TEST THAN THE SALLY-ANN EMPATHY TEST. If you find that the test is a poor reflection and in fact, a harmful gauge of autistics' capacity for empathy, let's create a more reflective/accurate assessment.

As a parent, though, I am more interested in these questions:

1. Does my child know what answer he was "supposed" to give?
2. Can my child know the behaviors "expected" with the answer rule?
3. Can my child perform the behaviors?

This is the rule of social norms. It's not about reason (we're human beings, we all have to be indoctrinated to reason) and it's not about relevance and half the time it's not even about the truth.

Social norms is about "the end" justifying the means. However you want to define "the end" as your desired outcome, you need to learn the "means" necessary to get that outcome. There can be many paths to the same end, but you are also constricted by the awareness of your social environment. This requires you to then adapt your behaviors to the social environment. Sometimes this is too overwhelming for a person (autistic or not) to control, then we have "socially awkward" behaviors or even "socially inappropriate" behaviors.

That's really the crux, isn't it. It is all about knowing the "why." Why am I asked this question, however stupid it sounds to me? What are they trying to learn about me? How do I communicate to them what I want them to learn about me? Importantly: Do I have contingency plans for when we have a communication failure and I'm completely overwhelmed?

Oh and I almost forgot... Part of surviving in a human society is learning how to live among stupidity and still function. True whether you're autistic or not autistic.

Here's something that happened today (soon after I this) relating to perspective taking -

I was walking with J today and J saw a truck turning at the stop sign. (Mom & J, we are walking this way. Truck was turning this way.)

J said, "Look, it's turning right!"

I thought, "Hm... he is taking the perspective of the truck. Very good."

It's a great (because it's unprompted) clue for me to know that J can take the perspective of the "other". If he were a child who'd fail the "Sally-Anne" test (he was never given the test so I wouldn't know if he'd fail or pass) he would probably say "Look, it's going straight" because the truck is heading in the same general direction we were heading and he'd be taking his own perspective. But you know what though I have a hunch that if he were to take the Sally-Anne test, he'd fail even though he's shown a capacity to take perspective. Because I'm with the crowd that thinks 1) the test is BS and 2) the test is going on the "power" of a sample size that in normal biological sciences cannot ever pass muster of "conclusive."

How this Sally-Anne test ever gained the popularity it did, let alone gospel-like, mystifies me. SBC has a good public relations/media machine going on.

We go to a block party for July 4th. The entire street is blocked off and people rent many bouncy houses and inflatable water slides for the kids to play. J has a great time riding his bicycle on the vast expanse of street.

I need to go inside the house to use the restroom. I am removing my shoes as a boy maybe 11 or 12 years old goes past me and says something. I can't understand what he is saying since I am not paying attention and he isn't looking at me so I think he is speaking to someone else. I don't think much of it, kids are running around all over the place, being rowdy and generally having a great time on the block.

Then the little girl closely behind him maybe 8 or 9 but certainly younger look at me and says, "I'm sorry." She is apologizing for him. The boy has already run up the stairs. The little girl and I make our way into the house. I say, "I'm sorry, I didn't understand what he said." The little girl is calling up the stairs, shouting her brother's name. She begins to run up the stairs, but looks back at me and says, "he's taking speech therapy." I say, "OK" but she's already disappeared upstairs.

What am I going to say? That I understand? That I have a child on the spectrum? That my child too needs speech therapy? That she doesn't have to apologize? That I want to give her a big hug?

I am coming out of the restroom and I see them, the boy running out of the house in bare feet, forgetting his sandals. His sister putting on her sandals then chasing after him calling his name and that he needs to put on his shoes. I take his sandals out of the house and watch his parents tell him to put on his shoes.

He runs up the drive way where I'm standing and I point to his sandals, which I've put on the ground. "Here are your shoes, put them on," I say to him. He does, and I see his younger sister running up. Is she here to facilitate? To translate or explain? To keep him safe?

He begins to sign at me while saying something that I can't decipher. "I'm sorry, I don't know sign," I say, wishing I know sign language. I turn to the sister who is watching and ask her if she knows sign language. She shakes her head no.

They run off and blend into the scattering crowd of children playing on the block.

Even before I learned that my child was on the spectrum, I knew there were differences. These differences prevented me from fully engaging in conversations with parents with "typical" children. They talk about what summer camps to pick for their kids, fretting over the age cut-off for kindergarten (usually that they had to wait until their kids are too old when they could handle kindergarten at age 4...) while I'm wondering when my little one was going to start talking and not be overwhelmed by sensory stimuli that didn't bother his peers to the same degree. I stopped hanging out with most of these parents.

Once I learned that my child was on the spectrum, I hung out with other parents "like me." But I'm getting burned out because it seems that our conversations revolved around our children and besides this overriding commonality we have few other commonalities. We're either talking about what the kids have accomplished, or how we don't take anything for granted, or how this difficult journey makes us better people (stuff that I suspect I tell myself because it's partly true, and because it's partly how I can get through the tough times.)

I think what bugs me a lot is that I don't get to "take things for granted", when sometimes I want to not have to "celebrate every single success" that regular parents don't have to think twice about. Sometimes I want the option to be able to take things for granted. Instead, I use not taking anything for granted as a way to comfort myself, and it's getting old. Sorry: not going to give you romantic lies, it sucks even when I'm handling it and love my child. It is hard and hard on me.

Instead of sharing common interests, talking about things like some books we've read, or what's going on in the (rest of the) world, I find myself having to share the single common interest that frankly I don't want to label as my "only" interest - and it's not even "kids" if I think about it it's "what is happening around our kids' therapy programs."

Don't get me wrong: I think about my kid almost all the time, but I am with him almost all the time. My life right now feels like it revolves around his instructional programming (which he needs to be ready for school). I'm just sick of having to discuss it or talk about it or hear about it at the # of hours I seem to be exposed to it.

I'm starting to burn out with parents I can identify with, because many parents of younger children are so intent on aggressive therapies that it seems to consume the entire families' identities (it feels like that to me, I am not saying this is how they identify themselves or their families.) Recently I made a decision about not making "special needs parent" my identity because I was getting sucked into it, and it was seriously bringing me down and I stopped dreaming or making any goals ("what's the point, right?" That was how I felt for a few months before I pulled myself out of that mode of thinking.) But I found that this decision is as difficult to enforce as it was to make.

What am I supposed to do to have some type of social support without feeling like I don't quite belong, or feel like "here I go again, having to talk about this, even in my down time"?

Some options I've considered:

• Find parents of older children with the same special need, they've been around the block longer and has a different perspective
• Find people (parent or not) with similar interests as mine, and build on that

I'd love more options and ideas, I'm feeling really burned out because I feel like I'm constantly thinking and talking about being a special need parent, and while this is true, it's not my entire "identity but it sure feels like this most of the time.

Based on my Quora answer and expanded as I think about this some more:

I don't mind too much that sometimes people lie to each other ("the white lies" category) and even when they each know this is a lie, they will accept it and keep on conversing because keeping that connection may be more important than the fidelity of content.

When people tell me they're fine, I don't always believe them. Instead, I look at their body language, their facial expression, even the way they frame statements around "I'm fine" and try to "read between the lines" and look for subtext. I make up complicated stories about why I shouldn't believe they're fine, when in fact they may really "be fine" because occasionally I was right and they weren't fine.

I'm able to selectively block out competing visual or auditory stimuli to focus on the one I'm actually interested in looking at or hearing. Sometimes I'm able to pretend I'm listening to the person speaking to me when I'm actually trying to eavesdrop on the conversation next to me. I'm able to keep hold the gaze of the person talking in front of me while tuning my ears to the people speaking nearby. This is how I can pretend that I'm more interested than I actually am.

I don't mind "socially pretending" (feigning interest) because I know often people like to talk about themselves and not listen to me; they're more interested in my listening ear or having any listening ears. So if I'm pretending I'm interested in hearing what they have to say, when I'm actually listening to someone else, then I can justify it as a "win-win" (they talk about themselves, I listen to something I'm interested in.) Now that I'm older, I've learned to see the value in people's experiences so I can pretend less if I find a person inherently interesting.

I'm not autistic but small talk used to bug the heck out of me, because I find it a waste of time, but that was when I was younger and felt that only talking about "serious" topics (in other words, topics I was personally interested in, so if I were interested in hair spray I'd consider it serious not that I was interested in hair spray, I was using an example) was worth my time. Now that I'm older, I'm able to tolerate small talk because I realize that sometimes it's nice to spend some time "connecting" with a person via that moment of interaction. If the topic was interesting then even better, but short interactions favor small topics because then we can move on and say goodbye and not have an existential debate hanging over our heads.

I can make myself participate in social rituals that I find silly and even a waste of my time (see Office Politics: What are the ramifications of consistently but politely declining invitations to socialize with co-workers?) because I'm able to quickly "size up" the reward/punishment rule that is unspoken but governs the group. So I may hate happy hours and group dinners but I will make myself go because I hate even more the misunderstanding I'll have to fight about how I "may not be a team player." Then I will draw upon my ability to pretend and feign interest (when I'm younger) or my ability to see each person as inherently interesting (now I'm older) and enjoy more the time I'm forced to spend.

P.S. grammatical errors & typos bother me, but not as much as they probably would bother me if I were autistic. As you will probably see from my answer here, w

This is my in-depth report on Dr. Tanya Paparella's new book, More Than Hope for Young Children on The Autism Spectrum: A Step-By-Step Guide to Everyday Intervention.

I met Dr. Paparella (I call her Dr. Tanya when I was there) when J was at ECPHP. Dr. Paparella is one of the two medical directors supervising ECPHP and oversees the class J was in (Sunbeams) as well as the younger class (Crystals.) The very first day when I was in the 2-hour intake process, a graceful lady walked into the room and extended her hand to me. Dr. Tanya Paparella introduced herself, and I felt at once shy and smitten with her serene presence and her accent.

I would get more time with Dr. Paparella during our child's stay at ECPHP, as I would ask her questions that would mystify or frustrate me. She is incredibly busy, yet she stops in the hallway when she sees me or another parent and offers her smile and quiet support. She never made me feel hurried, or that she was too busy for us. She thinks very carefully my questions and answers to my level, which means she makes the effort to get to know me as a parent and where I'm coming from. She has the difficult job of reminding me that my child has autism when external forces planted seeds of doubt that made me question my sanity. And she did all of this with a level of compassion and love that we parents can feel throughout our journey with our child at ECPHP.

I write the above preamble because I want readers to understand what they can expect from this book, and why I was not surprised to see that Chapter 1 was Courage, and why I smiled when page 2 offered a bolded statement: "parents do not cause their children's autism" that was followed up by "young children on the autism spectrum can make enormous change and achieve what seemed impossible." I have heard Dr. Paparella say this to us parents during her weekly support group and heard her explain what we can do to help our children and still remain our children's parents. This is a book that believes in your child, because Dr. Paparella believes in your child and more importantly this is a book that is compassionate toward you as a parent, and holds you in positive regard as a parent.

Chapters 1 and 2 are fundamental chapters to dealing with the emotional aspects of finding that you have a child on the spectrum. Besides courage (whether you believe you have it or not, you will draw upon strength you didn't even know you had), chapter 2 discusses signs and stereotypes that newly-diagnosed or peri-diagnosed (I made this term up to mean: you're not officially diagnosed but you strongly suspect and probably made that decision within your heart even as you're yearning to hear a professional tell you that you're wrong) parents hold, such as autistic children aren't affectionate, they don't speak, they always don't have eye contact, etc.... the stereotypes that confuse and cause delays in children who need to receive the diagnosis so that they can receive the appropriate intervention. Don't skip these chapters even when you are eager to get to the chapter on language.

Chapter 3 speaks to a focal point of many parents whose children are on the spectrum: Language. Language deficit is probably the most visible warning signs that "something is amiss" for those children who don't fit the stereotype of "what autism looks like." I like how Dr. Paparella helps parents "see" from their children's perspective, guiding parents to follow the child's lead first and aim for contingent language teaching ("Join your child's attention.") Next, scale your language to your child's level. This makes a lot of sense but we adults have become so used to complex language with undertones and overtones that we need to be reminded to keep it simple. Imagine yourself learning a foreign language. You'd want to hear distinct words, preferably one syllable words that correspond with a concrete object (nouns) or action (verbs) first. Otherwise you'd be confused. Imagine how much harder this is for a child who hears every single sound in his environment and has to learn language from adults' fast and complicated utterances. These sounds become a blur to the child. What I like about Chapter 3 is how the method is direct and clear and actionable.

Chapter 4 builds on Chapter 3 and discusses an aspect of language that many parents of kids on the spectrum may not readily appreciate; I certainly didn't. Chapter 4 opens with the importance of gesturing, an action we take for granted and therefore, often fail to notice when gesturing does not occur. For example, I remember at a general parent support meeting, one of the parents talked about how her son was taught to nod his head, "yes" or shake his head, "no." She never noticed that her son did not nod or shake his head along with the verbal communication, until she learned to notice. Gesturing is a major component of our social communication, from the most visible (pointing, turning of our bodies) to the subtle (the way we raise our eyebrows, whether we turn our body at a certain angle, even the way we smile with our eyes or with only our teeth) - these hold clues to the totality of human communication that our children on the spectrum may not infer and need explicit instruction.

To me, mastering the totality of communication allows a person to start "predicting" and "anticipating" a social interaction with another person, which then helps lessen anxiety and fear that comes from lack of predictability from one's environment. I personally believe that our children can learn these rules, just as "typical" children have learned these rules, only that our children have to learn these rules in specific steps and through explicit instruction... but our children can learn these rules. I know that parents are eager to hear their children's voices: I was there! But now I appreciate more and more the importance of hearing my child's "nonverbal communication" in the form of pointing and gesturing, because these forms of communication are as critical to my child's ability to navigating social exchanges as verbal communication. I was glad to see Dr. Paparella include this early on in the topic that is a major draw for parents like me.

For newly-diagnosed parents, you are learning aspects of basic behavioral instruction even when you may not realize that you are. Terms like "errorless learning" and "prompting" and "prompt hierarchy" will become every day terms for you down the road, but you're learning what these terms mean so that you can become informed when you hear them again when evaluating the behavioral approaches that may work best for your child's instruction.

Chapter 4 discusses eye contact, which honestly I didn't care much about at the beginning. I was one of those parents who couldn't believe my child was on the spectrum because he had eye contact. However, over time and after gaining some "experience" along this journey and also shedding my blinders, I began to see that my child's eye contact was inconsistent. Since we live in a society where eye contact is often the first line of communication and an important non-verbal communication, we parents have to require eye contact.

And yes, all of this seems overwhelming at the beginning. I remember being told by another mom that soon this will all be second nature to me, and I didn't believe it. Yet now I routinely gauge the complexity of my language, checking to see whether I may be inadvertently reinforcing my child's echolalia by "echoing him" (therefore teaching him by example), and sometimes as soon as a sentence leaves my tongue I knew that sentence was too vague or had too many complicated parts. All this happens within a blink of an eye. That's when I realized: this has indeed become second nature to me, and honestly, become easier over time. You can learn this, and this will become second nature to you.

Chapter 5 gives good ground rules for building social engagement with our children, and enthusiasm (yours) is the major component. For those of you who are hemming and hawing about exaggerating your enthusiasm, let me just say this: it doesn't matter how you feel about exaggerating enthusiasm ("oh I can never be that silly!" or "that's so fake!" or "I'll feel so weird doing it!") you can silently think all these nagging thoughts in your head but as long as you DO IT you get to keep all these judgments if you want to keep them. In this arena, it matters what you do even if what you think and how you feel aren't always congruent. DO. [I've suffered from major clinical depression, I'm an introvert, and I'm full of self-criticism (I forgot to mention, I'm also Asian, I come from a culture of self-restraint and emotional containment) so I have more excuses than most to explain why I'm incapable of exaggerating my enthusiasm. Yet I have learned to throw a "praise party" when my child makes effort, because practice makes perfect and I'm committed to practicing as best as I can.]

Chapters 6 (Sharing Experiences) and 7 (Imitation) gives parents an instruction for modeling social interaction that have been shown by research to facilitate language acquisition. These chapters contain the mechanics of "how" to create the situations ripe for sharing experiences or to encourage children on the spectrum to imitate. These chapters also continue to introduce terms like discrete trial training (DTT) and generalization, which you will use as part of your daily vernacular, in time. Again, these chapters hone for me the importance of "non-verbal" aspects of communication, and how these non-verbal aspects build toward a verbal communication in our children. These also become important for our children to begin learning from their environment in greater capacity than before they were taught "how" to join attention and imitate.

What has been tough for parents like me is that I didn't know I had to "systematize" these processes until now. I'm no longer a parent who can take for granted my child's ability to join my attention, share my experience, or imitate as a matter of fact. Therefore, I am required to break down these processes that "other" parents don't have to think twice about, and then I have to learn how to teach these processes to my child. For some of us, these processes may not feel natural and we feel somewhat contrived and strange teaching it... my way of saying "it's normal to feel like you don't know what you're doing, as long as you keep practicing and it becomes almost second nature."

Chapter 8 (Change Unusual Behaviors) is one I know many parents will pay close attention to. This is because our children's "unusual" behaviors - "stimming" in autism parlance are often the most visible signs of our children's differences even before they open their mouths to speak (then we have the auditory signs of our children's differences, whether or not they speak and what they speak about and how they speak.) This chapter guides parents through the possible functions of the behavior for the child and more importantly, suggests possible "socially acceptable" replacements. Most of us probably know how hard it is to break a habit, especially habits that are self-reinforcing: we stand a better chance if we have a replacement habit that gives us a matching level of reinforcement.

"Flexibility is Key" is a Chapter 8 topic that I think needs its own chapter, because I wanted to read more than 3 pages of this critical "life skill." Flexibility is another aspect that many parents take for granted, but parents like me cannot... and yet flexibility (or adaptability as I tend to think about it) seems to me a critical "survival" skill. Maybe in our developed society, this has more to do with social survival than physical survival, but flexibility is critical to survival nonetheless. [Dr. Paparella, if/when you write a second edition, I'd love to see an entire chapter devoted to Flexibility/Adaptability.]

Entire discussions can grow from this chapter about unusual behaviors, because it is a "hot button" between those from the autistic community who may view "stimming" one way (part and parcel of the autistic presentation warranting total acceptance), while parents of autistic children may view stimming very differently (what causes their kids to be ostracized and bullied.) I know of parents who cannot tolerate any amount of "stimming" no matter what kind of stimming this is. I know of parents who cannot even say the word "stimming." I've come to view parental perspectives toward stimming as a divisive factor in the "autism parenting" group.

I belong to the group that allows "stimming" based on situations with my child. At the end of the day when my child is tired, I turn a blind eye to his "stimming" whether this is lining things up or turning everything into a vacuum cleaner. The kid needs a break. If he is anxious, I know he will probably script (delayed echolalia). If I cannot offer him a better alternative or redirection or coping skill, I do not interfere. This doesn't mean I don't feel that tightening knot in my chest, knowing how others who don't understand may look at him with curiosity. This doesn't mean I don't feel that overwhelming temptation to tell him to stop, just stop. This doesn't mean I'm not already projecting forward and wondering if what I'm doing is somehow setting my kid up to be a future bully-target. I feel - and fear - all these things but I don't let my own anxiety of judgment (toward my child or toward me as a mother) interfere with my child's way of coping with his anxiety... because I can't yet give him a different or better way.

I wish all "newly diagnosed" parents read Chapter 9. It will save parents a lot of money and emotional roller coaster of riding the autism biomedical treatment industry. Dr. Paparella is diplomatic and understands why parents jump on bandwagons. Her position is, "...to always support parents as long as there is no potential harm to the child." The reality is that many parents will not consult with their child's psychologists about these biomedical therapies, preferring to listen to anecdotes of peer parents. The reality is that parents' desperation for hope and signs of "improvement" in their children can and do color parents' perception of what is "potential harm" to the child. The power of a peer testimonial cannot be underestimated. I have been in the same room with parents who are so enthusiastic about a particular "therapy" that other parents immediately go buy whatever their peers have bought for their children, hanging on the hope that their child will "be cured".

Dr. Paparella touches upon pharmacological approaches in 2 paragraphs without naming specifics, which is sufficient for the scope of this book. The chapter discusses educational and behavioral intervention and is a good introduction to behavioral treatment approaches. I remember asking Dr. Paparella a question about different behavioral approaches and she described the spectrum of interventions from Floortime to DTT. I liked looking at these behavioral interventions as a "spectrum" because it aligns with our children are on a "spectrum" and it is more about finding the matching approach to our individual children.

In the section "What We Know" Dr. Paparella uses National Research Council's guidelines on interventions for children on the autism spectrum. She gives a list of 10 items that parents can follow to gauge the "what, how, and how much" around their children's early intervention. She also gives parents guidance of when things need to change for example, if a child does not make progress in 2 weeks with a 5 day a week program. This gives permission to new parents, who are often anxious and doubtful about their lack of "expertise" when weighing their observations against "expert opinions" to change programming because their children are not responding.

I had to laugh at NRC's "intensive" intervention of 25 hours/week. I laugh because the level of "intensity" I am bombarded with as a parent is 40 hours per week (minimum)! I know parents who think 50-60 hours per week is very reasonable and absolutely defensible. Special education attorneys routinely fight for weekly 40 hour ABA program funding from the school district, citing the 1987 Lovaas paper as research-based proof for wanting these hours. The definition of "intensity" in autism intervention seems to have shifted from when NRC published its guidelines in 2001. Now it seems like a parents' race to cram as much therapy into every conceivable hours of a child's day, in order to be considered a "good parents, doing everything they can," for their autistic child, regardless of how impacted their children are. The knife cuts both ways: if your child is higher functioning, then you should do everything you can to "make her look normal"; if your child is lower functioning, then you should do everything you can to "improve his functioning." There is so much pressure on the parents when it comes from speaking with other parents. We don't even need to overtly pressure each other: it only takes one enthusiastic parent to evangelize to other parents a therapy or way of thinking...

In Dr. Paparella's closing thoughts, she included a note that said, "I hope it brings you many hours of practical and exciting instruction, and joyful times with your child." I think the reason why this book is so important - why this book is so needed why this book is so critical at this moment in time for our children on the spectrum is that many of us parents have forgotten what joy feels like. Some of us have forgotten what our relationship with our children feels like. Maybe some of us have forgotten that our children even feel. Some of us have stopped looking at our time with our children as "joyful". Some of us have bought into the hype and the fear and peer pressure, thinking if we don't "hit 'em with everything we got," we must not love our children as much as other parents who are "throwing everything but the kitchen sink" at their children.

Thank you. Dr. Paparella for seeing our children as they are, holding the highest regard for each of them, and for helping parents like me navigate this emotional journey with my eyes and heart wide open for my little one.

I did not find any peer-reviewed research on use of pacifiers causing autism.

Sorry if this causes problems with people who want to suggest that giving babies pacifiers will make them autistic.

I recently wrote this in response to a question on Quora about how to be a good friend to parents who have special needs children. This was helpful for me to understand why I've kept the friends I've kept...

1. Learn about the condition(s)
   Sometimes it makes things easier not to feel like s/he has to explain what the condition is, and depending on the disability (especially ones that appear "invisible" because there is no dramatic physical differences our eyes can see), it helps to not have to explain why something is happening because his/her friend already understands what s/he's struggling with or working through.

2. Follow your friend's lead.
   Maybe s/he wants to talk about what's happening with his/her kid(s), maybe s/he wants this time to be his/her down-time and doesn't want to talk about his/her kid)s), or kids in general, because s/he's been talking about his/her kid(s) all day long with professionals and therapists and insurance companies and the school district. Sometimes it's OK to be silent and not have to say anything or ask anything. Presence full attention is precious, for children and adults, and especially for parents of kids with special needs.

3. Remind your friend that s/he is still his/her own person.
   Maybe this is more important to me because I'm working through this, but I suspect this is important to all parents of children with special needs: we - and our kids are more than "the special need." It is too easy to be consumed by the special need that we forget we have whole and intact identities independent of our physical differences/abilities or diagnostic psychologies. A way for a friend to remind me that I'm still my own person is a conversation about something I'm interested in that has nothing to do with parenting or special needs or children, for that matter.

What about talking about children? I stopped hanging out with most of the parents with "typical" kids because it was hard listening to the regular conversation and not be reminded constantly how I'm not in that group. But I didn't say "all" - I still hang out with one of these parents, and we talk about our kids, but I think it's her demeanor and attitude (she has a PhD in psychology and maybe she's more in tuned with how to give me the space to process and also not say things that she knows "separates" our parenting experience too much.)

It's not that parents of typical kids shouldn't talk about their kids in front of parents of special needs children - it is the topics that are talked about. The topics can serve to widen that chasm of parenting experiences (such as talking about kids' achievements and performance or even giving kids experiences that not all parents can afford) - or the topics are universal in nature (we may all worry about our kids, we may all worry about how we can help them learn self reliance, we may all worry about external influences and dealing with peer pressure or bullying.)

This is the first time I've read Todd Drezner or heard of him, and I know it won't be the last. He wrote "A Parent's Guide to Responding to a Child's Autism Diagnosis" on Huffington Post and this is one of those "parent's guide" I liked. This is also one of the most accurate!

The steps are:

1. Read "Don't Mourn For Us."
2. Listen to autistic adults.
3. Get support from other parents who understand the challenges of autism but also believe in acceptance.

I think there are many reasons why, as a parent who is still considered a "newbie" (our learning of our child's diagnosis was in October 2011, less than a year ago), I quickly find myself drawn to Drezner's point of view. One major factor is that I have a differently wired brain (not autism: I have experienced clinical depression most of my life and was not diagnosed and did not begin receiving treatment until my early 20s) I know how it feels to "feel different" and a bit "alien" among my peers. Another major factor is my partner and best friend in this journey - my husband - is very much aligned with me in terms of our philosophy regarding autism. Our both being scientists (different disciplines: he in engineering, me in biological sciences) made us keen observers and analysts of our child's strengths and weaknesses, and we work together to "problem solve" wherever we can.

I'm surprised at how my journey has progressed almost step-for-step in the same vector as the ones Drezner has outlined.

Mourning is a given, and we went through this immediately. Mourning for me is a strange dance between intellectually grasping what Jim Sinclair had written and emotionally grappling with the loss of a child who never was. In fact, my husband stated as much when we had the talk that fateful night in 2011 when we both admitted that our child probably has autism days before we received the first diagnosis. I can't say I no longer mourn, or that I don't mourn but I can say that the "hurt" feels less raw than it used to.

My husband appreciated Jim Sinclair's article and wants me to share the link with as many people as I can!

I did not know I was listening to autistic adults back when I was listening to them, because I didn't know they were autistic until later, when one told me she was autistic and I came to recognize signs of autism in others. This was incredibly helpful, knowing that these autistic adults have led interesting lives even while they have different struggles. I found myself reaching out more to the autistic adults that I trust with questions on parenting, than "autism parents."

It also made me wonder did I not know these were autistics because I didn't know what I was looking for, or because they have blended in so well, or because I saw a difference and it didn't register in my mind as "problematic"? Maybe a successful inclusion of autistics in our society requires a combination of all these, including ignorance in "looking for differences" from people who do not accept or believe in autism as a subjectively different state of being instead of a disease. Maybe the success of autistics in our current society requires a combination of acquiring skills to blend in AND increased understanding and tolerance (if not acceptance) of differences AND continued ignorance from people who can't live with autism but can live with "quirky".

I'm starting to look for these parents and have found some both online and "in real life"/offline. But I'm struggling in this department. Drezner's DVD (which I will review in a separate post) touches upon the root causes of my struggle, when he looks for various perspectives of autism. There is a medical perspective that positions autism as a medical illness demanding treatment and cure (that autism is a byproduct of these underlying biological disruptions in immunity or gut process). There is a neurodiversity perspective that positions autism as a natural state of being demanding acceptance and inclusion. Then there is a middle ground where parents like me navigate, not sure how I'm supposed to talk about autism (openly) and *I* talk about it in front of my kid (yes), whether I should use the term "child with autism" versus "autistic child" (now I say "autistic" versus "has autism")... IT IS CONFUSING AS HELL (still)!

And it feels isolating. It feels isolating because I feel like a freak parent, not wanting to fix my child. This is because I've come across the thinking that "fixing" is what gives my child the best chance of "being normal" and integrating in society in a meaningful way. But who says I don't want to give my kid the best chance of integrating in society in a meaningful way? I do. I don't need to believe in fixing or curing and I don't need to "make my kid normal" to want this. I can help him express his right to living a purposeful life with supportive people as his friends and allies and advocates.

If autism is viewed as a disease or an illness like cancer, why wouldn't I as a parent want to get rid of it? I loathe to use cancer as a model for autism because this is simply NOT ACCURATE, even though newly diagnosed parents are mobilized to action as if they are faced with a child diagnosed with cancer. My husband and I have discussed this equation autism is not fatal the way cancer sometimes can be fatal, but autism can cause "social death" because of the social "deficits" per DSM-IV. All right then, let's look at treatment approaches best approximating long range conditions or chronic conditions. Oncologists now are paying more attention to quality of life issues when making treatment decisions with their patients. There are also new ways of looking to stabilize cancer in such a way that gives the patient a quality of life as much as possible while "outliving cancer." Prostate cancer is one of these cancers of "old age" where we look at ways to treat the patient that allows the patient to outlive the cancer even if we can't eradicate cancer.

Since I do not view equate autism as a disease like cancer, I do not view my child as a patient in the medical sense, but I have to accept that he needs this label to receive the appropriate services and interventions to learn how to navigate the rules of social ecosystem he has to live in. I can take the emerging mode of thinking about "stabilizing" and even "coexisting with" cancer and apply this to the social aspects of the autism manifestation because the social aspects hinder the autistics' access to the most expansive options in qualities of life employment prospects to daily navigation of "neurotypical" social relationships.

i hate having to feel "hopeful," and what's the matter with me, that i am getting offended when i'm asked: "look how much he is speaking, doesn't this give you hope?" (because imagine if i had a kid who is "more impacted," how much less hopeful i would feel, from how much more frightened i could be, how much more worried i should be.)

you know what i hate the most? being constantly reminded that we don't take anything for granted. (like that's a good thing, because this is how most people comfort themselves by imagining a worse situation, so they can feel better about their present situation.)

Inclusion isn't some mythological ideal, or an entitlement, or a legal term even though inclusion has become all these in the face of the education system's response to special needs students. Inclusion, in reality, is what real world "social ecosystem" is, when you strip away all the artificial structures of separation that our modern society has put forth on people whose needs and experiences of the world are vastly different from the majority. Modern society has learned to hide them away/institutionalize in the name of protecting them and sheltering them.

It is not a call against institutionalization because this insults certain categories like "group homes" that allow adults to access a quality of life in an environment that works for them (highly structured environment with appropriate supports.)

The article linked to a school principal's view of inclusion as a problematic philosophy speaks more to the systemic deterioration of our educational system that doesn't benefit REGULAR, NEUROTYPICAL STUDENTS than anything about the potential harm of including special needs students.

My commentary: There is at least a component to this issue that isn't addressed and that's because it is best addressed by those who are now adults of the particular special / different need. For example, we should be asking autistic adults what they think about full inclusion in gen ed classroom whether it is the appropriate thing to do for all autistic children. I suspect it isn't if we look purely from the perspective of the child's needs to be able to learn. There are children for whom a "full inclusion" environment is simply too overwhelming and this interferes with learning.

Ideally then, classrooms should have less children per teacher, but this is not the case. So the solution seems more systemic in nature, where a learning environment that is ideal for TYPICAL children (small classroom size, well trained teachers) should be a better one than what we can expect from today's public funded learning environments. This means part of the problem has nothing to do with "educating special needs" part of the problem is the education environment IN GENERAL, special needs or no special needs.

I've known a few parents of autistic children who place their children in special needs learning environment suitable for their children because the "gen ed" is too overwhelming and hinders their children's ability to learn; in this situation we may see more expectation in the district to provide funding for the appropriate self contained environment if the gen ed is not appropriate but is the district willing and able to fund? [I don't know but I suspect "no."] There are also parents who are open to partial inclusion in gen ed classes.

Another component is the low expectations- let's say we shift this and now teachers in special ed are able to teach not to the lowest "function" (in terms of a specific learning, which means the word "function" will change in definition depending on whether we're talking about language or math or art) in the class, but to the highest level of functioning for that specific learning. I suspect parents of special needs children will be more open-minded when we see that our children aren't going to be put in a place where low or no expectations are put on them it is a complete waste of their time and our resources as parents/taxpayers.

The thing about entering the world of “autism parenting” and recognizing how many of the “symptoms” I’ve experienced in the initial stages, even now, rings true of post-traumatic stress disorder (PTSD) is... SURVIVOR GUILT

Guilty I hear my child singing when some parents are still waiting to hear their children’s voices.
Guilty I receive hugs from my child when some parents feel the pain of their children recoiling from their touch.
Guilty I get looks in the eyes from my child when some parents desperately try to “find” their relevance within their children’s eyes.
Guilty I see my child smiling and laughing when some parents wish for “an affect” from their children.
Guilty I can imagine my child’s future and not become too afraid when some parents cannot imagine their children’s future because they will be paralyzed with fear.
Guilty I often hear “he is smart” from people around my child when some parents have to fight to convince people that their children are feeling human beings.
I feel so guilty I want to say, “I’m sorry I have all of this
When it looks like you fight so hard to get a fraction of this
I’ll do my best not to bring up any of this because I don’t want you to feel like I’m rubbing it in your face
Even though this is how I keep from looking down at the abyss
Even though this is how I stop hyperventilating, hanging off this cliff
I can’t imagine your pain, I really can’t (and don’t dare to)
And I am thankful a thousand times a day that I have all that I have and
Then I feel guilty that I get to be thankful at all, so I try to pay attention to what I say when I’m speaking with you
Because I don’t want my pain to Become an insult to your pain.”

The truthful answer is, “I don’t know.” I don’t know because to “know” means to have some form of a comparison, for example, if I have a non-autistic child and an autistic child, and I parented both for a certain amount of time that allows me to say, “Oh, I see, so this is how parenting feels different from one child to another.” That said, here are some realizations as a newly diagnosed (less than a year) parent:

I'm no longer surprised by contradictions. How do I explain why my child didn’t speak even past age three and doesn’t play with toys “appropriately” but he is able to assemble whatever he finds into the general shape of one of his favorite machines (a vacuum cleaner)? But wait, shouldn’t autistic children have “no imagination, no symbolic play?”, or so many “experts” believe and assert? How do I reconcile how once he had “words” (but not speech, because speech is functional/communicative), how he is able to remember verbatim a video clip but he can’t recall what happened 5 minutes before? Since I’ve learned to expect contradictions, I’ve also learned to observe how my child learns versus how I “think is the right way to teach a child.” Because he’s different, I’m trying to figure out what his learning differences look like, so I can teach to his strengths. For example, after testing different methods, I am now going to teach him to memorize whole words instead of phonics, because it will probably take him shorter time to memorize an entire children’s dictionary than to learn “what sounds does each letter of the alphabet make?”

I had to very quickly decide how I want to feel about autism. Do I see autism as a disease or a different state of being? Do I say my child has autism or do I say my child is autistic? Do I believe something else “caused” this or do I think genes have a lot more to do with it? If I believed something external “caused” this, do I believe this is direct or indirect cause — thereby leading to a cascade of “how do I undo this?” Here are the books & videos that I felt were most influential in the way my spouse and I view autism:

• Temple Grandin’s books (the HBO movie was interesting but not as informative when it came to early childhood years)
• Kamran Nazeer’s Send in the Idiots (I *loved* this book)
• Dawn Prince-Hughes’ Songs of the Gorilla Nation
• Laura Nagle’s Vectors of Autism
• Todd Drezner’s Loving Lampposts

(and view points from an online friend whom I had no idea was autistic until she told me and then she became a source of perspective and information when I had parenting questions; she is also a parent.) I chose to believe that autism is a different state of being due to a difference in brain wiring — and this state of being has its pros and cons considering the social context we live in. I don’t see autism as a disease whether chronic or acute. Therefore I don’t believe in curing or fixing autism. This means I’m automatically separating myself into “that group of autism parents who don’t believe in curing their autistic children.” This also means I feel the need to explain every time I say I don’t believe in curing or fixing that “I believe in teaching, it doesn’t mean I believe in ‘doing nothing.’”

It’s weird, that there is such a chasm within the autism parenting community. But I suppose anything as emotionally charged as our children, tends to be divisive. Think in terms of “breastfeeding versus formula multiplied a hundred-fold” and you get the sense of the divide and the judgment. Judgment cuts both ways, by the way, between the two groups. It is hard to remember that both groups love their children very much, I have to keep reminding myself that parents who want their children fixed and cured love their children as fiercely as parents like me whose philosophy lean more towards the neurodiversity philosophy.

Still, I don’t find myself in the extreme pole of neurodiversity. Therefore, I fought tooth and nail to get my child ABA services once we learned of his diagnosis. I also scrutinize the “type” of ABA instruction (there is a spectrum of approaches from DTT to DIR) that is provided. I look at whether my child is learning, is making progress, and appears to look forward to seeing his instructors. I tend to use the general guide of “if this cannot help, it must at least do no harm” when I evaluate therapeutic approaches for my child. This includes not “overloading” my child with therapy hours. Once I figured out my general views on autism, I actively seek out advice of autistic adults, so I can better understand how my child may be experiencing the world.

We had to decide how we want to “talk” about autism in our family. Do we talk about autism in front of our child? (yes.) Do we use code words like “the A word” instead of the word, autism? (no.) Will we tell our child about his autism? (yes.) We decided that our attitude toward autism, the way we speak about it and discuss it, will be observed by our child. So we discuss it the way we discuss “being of Asian descent” (in other words, a fact of life that comes with its own sets of pros and cons.)

It’s emotionally & financially draining. It’s common for parents like us to hear statements like God only gives us as much as we can handle and those who don’t believe in God may hear something like special children for special people — and generally it’s supposed to make us feel better like we have some extra capacity to give and love versus the average parent but the truth is, we have little/no choice, once we chose to have a child. Autism is emotionally draining when parents are told they need to be “on” the child 24-7, to make sure the child is otherwise not left to his/her own devices to “stim” or withdraw into their own world.

It is financially draining not only due to the therapeutic services the child needs to acquire functional skills to navigate society (because really, that’s the crux of it — to navigate society in order to survive), but due to “fighting the system” including insurance companies and school districts (during educational ages.) Sometimes parents have to fight using legal means, and special ed lawyers charge astronomical hourly rates. I’m not even accounting for all the “alternative” therapies we chose not to pursue, but those can really add up the bills.

Then you take all of these costs and multiply it with the life span of the child, adjusting for increasing levels of independence (that you hope becomes your family’s reality) over time. It is difficult to imagine and to comprehend, unless you’re living it. Even for those of us living it, we can’t imagine and project to the future because for many of us, we have no idea how future will unfold.

I deal with survivor guilt. I deal with how other people think about me and my child. I deal with a lot of unknowns about the future. I deal with fear and anxiety about my child’s safety. Other than the first one (survivor guilt), I believe I deal with a lot of the same anxieties and fears as most parents deal with even for their “typical” children. My anxieties and fears may be intensified because my child may have to specifically learn skills that other children “naturally pick up from their environment”, which means there are more opportunities for mistakes and hurt with my child.

J started school this week. We enrolled him in a private catholic preschool. The class size is small: there are only 11 children in J’s class although they are licensed for up to 15 children in that class. I’m crossing my fingers and hoping that this will be J’s school for Kindergarten through grade 8. Our ABA agency assigned 2 instructors to serve as aides — these are instructors who have been working with J since June and we are very satisfied with the quality of their team.

I think of how far he had come just this year, and to us it was clear how big of a role UCLA ECPHP played in J’s continuing progress. ECPHP had been the “kick start” or “jump start” we needed to understand how J learns and the approach to learning he will best respond to. I wish all children – including neurotypical children – has a way to receive this level of individualized instruction and attention even for 10 weeks of their early childhood education – can you imagine what a big difference this can make in helping parents and educators learn how a particular child learns?

Post-ECPHP, my spouse and I continue to observe and learn how J learns. It’s pretty incredible to see what happens when we sit back and watch how J interacts with his environment, without giving into the temptation to “stop” what may be considered his “fixations” (for example, he likes machinery in general, and he really likes forklifts right now.) Last week he wanted to make a forklift.

For some time he tried putting a wooden block onto the bulldozer toy that he owns but it didn’t look authentic. Fork lifts have those two prongs to lift up heavy objects. Hence, some improvisation on J’s part:

Anyway… it’s many months since ECPHP, I’ve had a chance to assume the role of “care coordinator” — a role that ECPHP parents didn’t need to think about because we are assigned excellent care coordinators at UCLA for our child’s program. It can be very, very daunting for parents leaving ECPHP and finding themselves once again, being “the key point of contact (and complaints and problems)” for their children’s care.

We’ve received positive feedback from all the stakeholders around J’s education and care (even the district personnel conceded that we parents have always been courteous and respectful even if we filed for due process.) I’ve made a good part of my professional career working with management and I continue to appreciate how much what I’m doing now mirrors “good management & team building.” Seriously, at the end of this, I can probably write a book about how to build teams when you don’t have true “authority” in the way of decisions. We parents can mainly influence and at some points, exert legal force, but for the most part, we have to excel at the “soft skills” and “team building skills” when managing a successful care strategy for our child.

Here are 3 of my best practices, that have worked well for us

Keeping team members from different companies/care providers/points of care on the same page. I ended up creating a periodic “newsletter” that I push out to the team members. It’s on email and therefore people get it on their phones without having to log into a website. I also summarize core goals and progress and then stuff to pay attention to, if there are specific requests by a team member (say, the ABA person wants the speech therapist to pay attention to a verbal self-stimulatory behavior) then I’d put that in the newsletter. I did 3 of these (once a month, we’re about 4 months post ECPHP) before narrowing the core therapy program down to “only” ABA at this point. Now that J has started school — I may do this once a quarter then include J’s preschool teachers. I’ve gotten good feedback from people on this because they are updated without having to log into anywhere. But in the newsletter I do include a link to the password protected portal I set up via Google sites, and that google site is very, very detail oriented.

If you decide to do the “push out” format (i.e. newsletter) be sure to use initials for your child’s name not the full name. You may not know if the therapy team forward the newsletter onward (they aren’t supposed to, but you should be safe just in case).

Remind team members of your family philosophy & teaching philosophy. What? Family philosophy and teaching philosophy? Yes. If you haven’t discussed this already, have this discussion as a family team/parenting team. My spouse and I have very clear terms on our approach to teaching J. We mostly begin by observation and non-interference, including behaviors that we may view as “self stimulatory” or “fixations”. We begin by understanding the purpose of these behaviors, then we identify strengths that may emerge, and how we as parents may leverage these for teaching.

We then communicate our philosophy to our team members. We let each team member know that we believe in a specific sequence of behaviors based on “least restrictive” levels of support. Therefore, for most situations, we expect J to solve his own problems and offer increasing levels of support only when needed. You may be familiar with the “prompt hierarchy” which begins at “no prompting (completely independent)” then progresses systematically through a series of non-verbal then verbal prompts and only as last resort is the “full body prompt.” We expect resistance and crying at the beginning, because learning a new skill may be difficult, and we build in this expectation. We look at the “quality of the tantrum” (seriously, I’m not kidding, tantrums are not all created equal: a tantrum with lots of shouting and verbal screaming is a higher quality tantrum than a tantrum with physical aggression/hitting and kicking on the floor) versus “tantrums are all bad” mentality.

Often I’ve found team members want to know how the parents think about certain issues and approaches, so they can be comfortable following through with a certain approach of teaching.

Actively and specifically communicate what you’ve observed a team member to have done well. This is probably something I’d learned as a consultant working with companies looking at why some leaders are strong and gain loyal teams versus why some people in authority get no respect and lousy performance from an otherwise competent team. I make it a discipline (not just a habit) of catching people doing things right, then I make a detailed record of that and communicate it up. This means I write an email to that person’s boss, letting the boss know this positive feedback I have about that employee, and why I as a parent & stakeholder appreciate it. Sometimes I may also copy the person’s trainer. These notes go into that employee’s personnel file, and makes a big difference in performance reviews. When it’s unsolicited and specific, companies put a lot of weight on this. I have also made sure to include items we wish we can take for granted, such as “I can tell that this instructor truly cares about J and likes working with J…” — I look at it as reinforcing positive behavior and further strengthening the working relationship.

One of the most effective ways to create a strong team, is to assume the role of a “talent developer”, looking for ways a team member is strong and bringing this to that team member’s attention. It shows them that I am a parent who pays very close attention, not only to the programming but to them as individuals, and it makes them work hard as J’s team members.

I’m writing this at the beginning of week 2 of J starting in a “mainstream” private preschool. Two of our ABA instructors transition to become J’s 1:1 aide at the preschool. Really, too early to tell but I’m analytical so here’s my SWOT:

Strengths
• Preschool is completely new (as in, they’ve never had a preschool before, and now they start one)
• Director of preschool came to observe J when he was at UCLA thus showing her sincerity in wanting J at her school
• Director is motivated to help J be successful
• Our instructors now know J really well from working with him at home the past 2 months of summer, and they are allowed (and cleared) to be his 1:1 aide at the private school
• Our instructors are really competent
• Class size is small (11 total in J’s class)
• J has acclimated well overall

Weaknesses
• Preschool is completely new (Yea I know, I listed this as a strength also) – there are some growing pains like establishing the daily schedules & routines
• Original AM teacher turns out to not have the right age-group experience (big difference between 3-5 year olds and 8-10 year olds!) therefore new AM teacher is hired and we’re back to square 1 establishing the daily schedules & routines

Opportunities
• I plan to actively volunteer at the school: I’m not looking at a “room parent” level because I will be a major distraction to J and thus want to restrict my visibility in his classroom, instead I will be volunteering at the admin level and directly help the Director
• I signed up for the preschool parent board. Probably will focus on fundraising given this is a private school, but I plan to propose certain initiatives for social inclusion once I acclimate
• Now that I know what good facilitation and good behavioral intervention looks like, our team can better assess learning programs for J not only academically but socially

Threats
• We are under a settlement agreement with the public school district. I’m already thinking ahead to 2013 school year and what our strategy needs to be. The way these things go, lawyers may need to be involved again, which is never a pleasant experience for all parties involved.

I can’t believe that we’ve gone this long without correcting this mistake. I’m talking about leaving out a word when describing certain autistics. You know… the ones “we” (who aren’t autistic) call “non-verbal”. We keep forgetting to complete the sentence. They aren’t “non-verbal”. They are “non-verbal COMMUNICATORS”. Can we at least complete our sentences, for god’s sakes. So we don’t look and sound more ignorant than we have been when framing conversations about autism and autistics.

Sometimes I think we’re the ones needing intervention about how autistics “should” communicate. Even better, this:

Posting this on behalf of my husband.
While the song and its lyrics refer to something else (adult actions speaking louder than words), the title itself ‘more than words’ struck me (in a moment of clarity) as the perspective through which we can appreciate and view our autistic kids. We often focus so much on the words that are coming out of their mouths (or not), and base their progress on their verbal communication, that we can lose sight of the fact that they are so much more than their words, and that they may feel, communicate and think in non-verbal ways different than ours. While we all know this as parents, we sometimes need a little reminder.

So remember: your autistic kid is so much more than words.

I haven’t been in this long, but I’ve come across more fixations about autism and autistic children than I’ve bargained for. Like a director of a behavioral agency who cited the 1987 Lovaas study and how our little boy is the profile candidate for a 40 hour-week behavioral therapy program for the best outcomes (i.e. “indistinguishable from peers”). Excuse me, director, controversy about the Lovaas study (not being consistently reproducible because of potential selection bias) aside... Have you considered the possibility that I am not interested in “making my child indistinguishable from peers?”

I want my child to learn skills to learn, and be taught in a way that is individualized for HIM. You know, considering that he is a PERSON and what was that saying everyone throws around… “once you’ve met a child with autism, you’ve met ONE child with autism”? Mass-trial DTT style ABA is not the way to go with my kid, I have seen the harm that this approach has done on my child. No, thank you.

Like a director of a preschool who cited decades of experience with special needs children as the reason why our little boy should be in school full time (that’s more than 30 hours a week, by the way) because ABA would “make him a robot.” Excuse me, director, lack of scientific evidence about the benefits of that many hours of “regular preschool” (translation: no extra support unless we provide it) on autistic children aside…

Have you considered the possibility that you aren’t even talking about my child? He has no problems generalizing, and in fact, this has been a strength from the very beginning, when you first met him. If you had ever stopped listening to the same recorded messages in your head about autistic children and LISTENED TO US, then you’d know this by now. He has responded fantastically to the NET (Natural Environment Training) approach used by the agency we’re using, but you never bothered to come to any of the team meetings we’d invited you to, so you couldn’t realize our child is not receiving DTT. We have made all decisions based on data and our own diligent and constant observation as scientists. You are making decisions based on no data gathered on your own, since you claim you can’t believe in data gathered by others who had earned our trust. We parents had provided the means of “inclusion”, which means this preschool is by no means a true “inclusion” preschool. To suggest, however subtly, that we are harming our child because we wanted to cut back school hours, reeks “this is mostly about money.” No, thank you.

Here is what is extremely odd: these individuals have stated that my child is smart (and he is.) Yet neither behaved in a way that supported their belief. These “experts” are hung up on some other children whose images still live within their mental sphere. Even when these children have grown and become different, I suspect they still hold onto the same mental images of these children. If I’ve learned anything, it’s to avoid “experts” who are completely fixated on their own internal recordings of what autism is, how autism should be treated, and what autistic children “look like”. And to take my kid and run, as fast as possible, away from their internal recordings.

We transferred J to a local public preschool, for the sake of reducing school hours. He was averaging 37 hours of preschool a week. He’d fall asleep during mandatory nap hours (he wasn’t made to nap, but he’d fall sleep since everyone was falling asleep) even though he’d long ago stopped napping. The protracted days and naps left him tired. I was once told about an experienced ABA person who said that attending preschool is what will be most important for an autistic child; it is what will help that child truly become indistinguishable from peers in a way that behavioral interventions cannot. I don’t know if I can believe this.

But I don’t send my child to preschool to make him indistinguishable from peers. I don’t send my child to preschool for socialization. He learns proper social rules from us and other “properly socialized adults” who consistently demonstrate the skills of saying “please”, “thank you”, “sorry”, “excuse me”, and “may I”. I have not found 3-5 year old children who can demonstrate these social skills. I don’t even send my child to preschool for academics. For our family, preschool is important as part of a “well-rounded” curriculum where my child figures out how to apply what he has learned in a chaotic playground environment.

The reason why we send our child is preschool, is that school is “social lab.” Once I realized the purpose of preschool as social lab, keeping my child that many hours a day in “school” made no sense, and the former school schedule has been harmful to his circadian rhythm. I also wasn’t confident in the other preschool’s ability to truly create an “inclusive” environment for J. I think the reason why J did so well was because of our behavioral team accompanying him to school as his aides. It wasn’t because of a differentiating characteristic of the school other than it being private parochial. In time, I began to lose confidence in the private preschool’s ability to truly accommodate a student like J. Once I lost that trust in the school, it became critically important that we do not lose the federal protection to FAPE that J deserves and we fought so hard for, and which a public school is legally obligated to carry out.

J now goes to the local preschool 2 mornings a week. The local preschool is even more “play-based” (lacking in academics) than the prior preschool J attended, and this is perfect for us. J transitioned well and his circadian rhythm is getting back to normal and does not appear as sluggish in the morning. I liked the fact that the local preschool demographic “looks like America”. There are children of many colors there. They appeared friendly and down-to-earth. There is a good % of boys and girls in the class. I don’t hear a lot of whining in class, which means I won’t hear as much whining at home from J picking up whining from classmates.

I have learned not to believe in the apocalyptic warnings of educators who claim that if you don’t put a child in a developmental preschool and expose your child to whatever developmental philosophies by age 5, that child is doomed to ruin. I’ve also learned that if a preschool director keeps telling you that she is a behaviorist but at the same time warns ABA will turn your child into a robot, there is lack of congruency and this is not the right environment for my child. Sometimes educators are too in love with their subscribed developmental theory to remember that they have one human being in front of them, and this human is N=1 and not a statistic upon which developmental theories are founded upon the statistical normalization of thousands of little human beings.

Rules of engagement we expect from any educator and professional who are in any amount of contact with our child.

RULE #1. Include & Treat CHILD as true stakeholder.
- Speak directly to CHILD in all conversations relating to CHILD, not about him as if he cannot hear or understand.
- Explain in language CHILD understands, what is expected of him during “homeschool”/lesson time. [I've been calling ABA home hours as part of "homeschool" to teach J that this is a learning situation]
- Ask CHILD for comments and/or questions. Even if he does not make use of this opportunity, he should have this opportunity.

RULE #2. Give CHILD increased level of independence during lessons/work.
- When working, we/instructors can ask CHILD if he wants us to step outside or remain physically removed in same room/space. Request that CHILD lets us know when he is done, or that we will check in after 5/10/15 minutes (depends on task.)
Goal is to increase CHILD’s ability to work independently for increased duration.


RULE #3. Switch from Praise to Acknowledgement.
- Stop constant verbal reinforcement “good job!” “great!” “wonderful!”. These have been overused and sometimes from a position of assuming incompetence, hence praising performance that does not require praise if the child were “typical”.
- Replace with statement of observation without value judgment positive or negative, “I see that you did X!” [J is at the point where he will request verbal encouragement, “mommy can you say ‘good job’?” and at the point where he has a negative response to overpraise. We suspect he perceives these as patronizing him and as if he were incompetent.]

RULE #4. Accurately Portray “Lesson/Work” and “Play” as Such.
- In true play time, CHILD can play however and whatever he wants. CHILD should not be redirected to play differently, or to play something else. CHILD’s “play” should not be labeled as ritualistic or perseverative. Data should not be collected for graphing as such.
- If contrived play/learning new play scheme, CHILD needs to be informed by instructor as such.

RULE #5. Teach to CHILD’s Emergence as a Dual Exceptional Student.
- Develop “splinter skills” like it’s a good thing (because we parents see splintering skills as a good thing, not a bad thing).
- If CHILD shows exceptional command of a skill considered advanced for his age, instruction should teach to develop this further. Teaching should not be held back for fear that “CHILD gets bored at school” — this is why CHILD should have an IEP — so we can advocate to provide CHILD with the “appropriate education” at the level where he has command, as well as accommodate CHILD’s challenges and disabilities where these do not interfere with CHILD’s access to curriculum.

Disclaimer: I’m not a MD, my PhD is biochemistry. This is not medical advice. My goal is to share stuff I’ve come across that I find useful, which of course does not always mean you will find useful. “When you’ve met one child with autism, you’ve met one child with autism” or for those of you who hate ableist language:”When you’ve met one autistic child, you’ve met one autistic child.” Knowing me, some of this stuff will probably piss off some of you.

Another Way to Understand Autism — Markram’s Intense World Theory “Many members of the autistic community have embraced Intense World Theory, claiming it to be an accurate reflection of their own experiences, and a radical departure from the outdated and socially stigmatizing disease models of the past.”

Starting points I like: Movies & Documentaries
Step 1. My life in pictures (Temple Grandin/HBO movie) – brought awareness of autism to wider public. It’s a good start and accessible to a public psyche.

Step 2. “How do I want to feel/think about autism as a loved one”
Loving Lampposts (documentary) & Refrigerator Mothers (documentary) – these 2 documentaries have been useful in shaping my perspective & perception of autism. Useful for calibrating how you choose to think & feel about autism if you are not autistic. A good introduction to meeting diversity of autistic adults. http://lovinglamppostsmovie.com/ ad supported free version http://www.snagfilms.com/films/title/loving_lampposts http://www.snagfilms.com/films/title/refrigerator_mothers

Step 3. “Where can I learn more about autistic adults who are not Temple Grandin”
HIGHLY RECOMMENDED: Wretches & Jabberers (buy DVD, download it on iTunes or rent it) – this documentary is incredibly moving, life affirming, optimistic, and honest. http://wretchesandjabberers.org/about.php
Vectors of Autism (documentary) by Laura Nagle – this documentary about one autistic adult has changed minds about the types of lives autistic adults live: autistic adults do not view themselves as victims, they have friends, and they do not view their lives as tragic. Empowering, but you gotta be able to handle this level of empowerment (and we don’t evolve into empowered beings at the same rate.) And not everyone is a Temple Grandin, just like not all physicists become an Einstein but this doesn’t mean they don’t live meaningful lives and do meaningful work. http://www.lauranagle.net/Film.htm

Books
Temple Grandin’s books
Send in the Idiots by Kamran Nazeer (I highly recommend it, although it has selection bias, i.e. only those autistics who agree to appear in the book are written about. This means those who have “blended in so well no one can tell” did not want to participate, lest they be “outed”)
Songs of the Gorilla Nation: My Journey through Autism by Dawn Prince Hughes

Education Resources
The Special EDge Newsletter (https://www.sipimpact.org/What-We-Do/Special-EDge-Newsletter/) — Free newsletter available online as PDF / HTML. This is a great resource to help you begin a productive dialog when maximizing the learning potential of students who learn differently.

Evidence-based comprehensive treatments for early autism. https://pubmed.ncbi.nlm.nih.gov/18444052/ Click for PDF from M.I.N.D. Institute, University of California Davis https://health.ucdavis.edu/mind-institute/

Content Standards for education in the State of California (similar standards may exist in other states) https://www.cde.ca.gov/ci/gs/

Management of Children With Autism Spectrum Disorders https://publications.aap.org/pediatrics/article/120/5/1162/71080/Management-of-Children-With-Autism-Spectrum?autologincheck=redirected

Behavioral treatment and normal educational and intellectual functioning in young autistic children. By Lovaas, O. Ivar. Journal of Consulting and Clinical Psychology, Vol 55(1), Feb 1987, 3-9. [The 1987 Lovaas paper that's continually cited for intensity of ABA treatment] https://psycnet.apa.org/record/1987-16420-001

Communicating with Your Child’s School Through Letter Writing by National Dissemination Center for Children with Disabilities https://www.parentcenterhub.org/ and https://www.parentcenterhub.org/letterwriting/

Difference between 504 and IEP http://www.wrightslaw.com/howey/504.idea.htm (everything on the Wrightslaw website is a “must read” for parents with special needs children in the educational system!)

Autism & Medication of Children

I love UCLA ECPHP’s child-centered model of behavioral intervention. That said, I’m concerned “in general” how many autistic children are medicated, sometimes with multiple medications, and regardless of how young these children are, and how often without much scientific evidence (forget rigorous evidence of “levels” of evidence) backing use. Poly-pharmacy is common in psychiatric illnesses (ask a bipolar patient or severely depressed patient how many meds s/he is taking and you won’t hear just one or two, but often many more meds).

I totally “get” that once upon a time, autistic children were classified under “child schizophrenics” and secluded away in hospitals and asylums (those people asking why suddenly we see all these kids in schools, it’s because those kids weren’t even given the right to be educated until recently with IDEA mandates in the USA, the children were there but had no rights to live among ‘regular’ society.) But that was then, pre-Kanner. This is now. It is ironic that we are once again treating autistic kids as schizophrenics and as having mental illnesses, the way psychiatrists are quick to prescribe anti-psychotics like risperdal and abilify. Granted, recently Abilify received FDA approval for irritability associated with autism in children at least 6 years old. But before Abilify got the indication, psychiatrists were medicating children with combinations of SSRIs, anti-psychotics, anti-epileptics.

Some links relating to published data and criticisms of use of unsupported (by evidence) use of medication therapy to treat children with ASD:

Pharmacologic Treatment of Repetitive Behaviors in Autism Spectrum Disorders: Evidence of Publication Bias: “CONCLUSIONS: Meta-analysis of the published literature suggests a small but significant effect of SRI in the treatment of repetitive behaviors in ASD. This effect may be attributable to selective publication of trial results. Without timely, transparent, and complete disclosure of trial results, it remains difficult to determine the efficacy of available medications.” [Note: this is only for physicians who bother to conduct some form of quality control of medicating patients in order to publish and share data.] http://pediatrics.aappublications.org/content/early/2012/04/17/peds.2011-3285.short Press release type of post on this: SSRI Benefit in Autism May be Overstated. https://www.medpagetoday.com/pediatrics/autism/32297

Temple Grandin on her medication (non-SSRI, by the way, she’s smart enough to know if the old stuff works not to change it unless it’s for a really, really good reason) for anxiety, which she started as an adult. She’s not against medication but is concerned with the amount of atypical antipsychotics being used in children on the spectrum. http://www.medscape.org/viewarticle/498153

also: Medication Usage: Risk versus Benefit Decisions “Parents must logically assess the risk-benefit ratio when contemplating any form of medication usage with their child. Discuss the medication thoroughly with the child’s doctor. Ask him/her to provide you with a list of possible side effects of the medication. Do some research of your own on the internet to determine how widely and/or effectively the medication has been used with people with ASD. This is especially true when medication is suggested for use with younger children. Physicians sometimes recommend that drugs that have been proven effective for use with adults be given to children. Ask whether or not research has been done on the effects of the drug with a younger population. That is certainly one of the risks of which you should be aware, but one that is not usually printed on the product literature!” http://www.autismtoday.com/ (link no longer works so I left the main website here)

Here’s another: Evaluating the effects of medication on people with autism “When a medication is being evaluated to modify the behavior of a person with autism, one must assess the risks versus the benefits. The benefits of the medication must outweigh the risks. Some medications can damage the nervous system and other internal organs, such as the liver. These risks are greatest in young children because an immature nervous system may be more sensitive to harmful side effects. A good general principle is that the use of powerful drugs should be avoided in young children when the risk is great. The younger the child the greater the risk. For example, it would be justified to give a young child Prozac to stop severe self-injury, but it would probably not be justified if the only effect was that it made him slightly calmer. If a medication improved language, its use would probably be recommended.” [I wonder how many of the very young kids are put on a drug for the promise that the kids will "look more normal" and become "indistinguishable from typical peers"] Original link no longer works, main site is also defunct.

Antidepressant Medications for Children and Adolescents: Information for Parents and Caregivers Published position paper after reports too numerous to ignore of increases in suicide ideation and suicide risks in children and adolescents taking SSRI medications for depression and anxiety (ironic, I know. Drugs that are supposed to stave off suicide risk due to depression creates suicide risks.) https://behavioralhealthnews.org/antidepressant-medications-for-children-and-adolescents-information-for-parents-and-caregivers/

I should mention that I once received *many* of these medications as a patient suffering from depression and that I used to work in the pharma industry and that I was a biochemist. I am not anti-medication. An SSRI probably saved my life when my depression was almost debilitating during my mid-20s. I am anti- psychiatrists who are quick with a prescription pad, who do not disclose conflicts of interest to their patients (as in, receiving money as consultants or speakers or clinical trial investigators from drug companies), and who do not take the time to bother explaining all the risks and benefits of why a young child is being made to take a powerful drug. I’m ANTI- that.

Not all parents know what questions to ask, because they are completely overwhelmed (often as newly diagnosed parents), therefore it is the physician’s duty to guide these parents and especially for parents of very young children. And in the realm of psychiatry, I’m sorry to say, the reality is psychiatrists don’t always know best. They are only making their best guess. This means the parents now have the burden to ask the psychiatrists to prove their clinical decision making, rather than putting blind trust in psychiatrists. We can only make our best informed decisions, thus we must ensure our information is trustworthy.