"When I meet the family members of someone with autism who haven't told their loved one -- usually a child -- of the diagnosis, it perturbs me, because they want to 'avoid labels.' I can assure you that not only does the autistic person always know that they are different, but they suffer deeply from not knowing why. While they try to come to understand themselves without having a name for their condition, other people definitely *are* labeling them -- and usually without the compassion that real education would bring. I have been told that the people in question want to save the autistic person from the 'stigma' of being autistic. I don't think they realize how stigmatized people with autism are -- because of their behaviors, not because of any label -- and if they don't know what is going on with themselves, their behavior isn't likely to change."

 -- Songs of the Gorilla Nation by Dawn Prince-Hughes, Ph.D.

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That's the response I'd give to people who give me unsolicited advice about my kid.

Re: http://highlandpark.patch.com/articles/bad-parenting

(of course, Yuji would be more polite than I'd be....)

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How many of the people working in the "system" (special ed, regional center, legal/advocate) appear so hard and bitter and angry and jaded.

How some of the people who are supposed to be working with you or for you, are as hard on you as the people who are putting up barriers for your kid to succeed.

How difficult it is to trust anybody because you wonder what their agenda truly is.

I look at some of these folks and I think to myself, "I do not want to end up looking and sounding like that. It is too big of a price to pay. Why isn't there another way?"

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Supports the saying, When you've met one child with autism, you've met one child with autism!

"This plot demonstrates the dramatic differences that parents of children with Autism Spectrum disorders face relative to parents of Typically Developed children. Unfortunately, due to how these differences present themselves in the time lags between visits, the primary question of 'Can this tool be used reliably to assess changes in autism patients?' cannot be answered.  The tool is highly reliable at all time points in Typically Developed children (who essentially have no symptoms) but it shows little consistency in children with Autism Spectrum disorders.  It does not appear that this lack of consistency changes with the passage of time."

autismplot.pdf Download this file

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Yet we don't hear about it in the popular media. Special needs kids don't have a voice (sometimes literally: some may be non-verbal) and apparently they don't have a voice in the media, either.

122526.pdf Download this file

GAO recently testified before the Committee regarding allegations of death and abuse at residential programs for troubled teens. Recent reports indicate that vulnerable children are being abused in other settings. For example, one report on the use of restraints and seclusions in schools documented cases where students were pinned to the floor for hours at a time, handcuffed, locked in closets, and subjected to other acts of violence. In some of these cases, this type of abuse resulted in death. Given these reports, the Committee asked GAO to (1) provide an overview of seclusions and restraint laws applicable to children in public and private schools, (2) verify whether allegations of student death and abuse from the use of these methods are widespread, and (3) examine the facts and circumstances surrounding cases where a student died or suffered abuse as a result of being secluded or restrained. GAO reviewed federal and state laws and abuse allegations from advocacy groups, parents, and the media from the past two decades. GAO did not evaluate whether using restraints and seclusions can be beneficial. GAO examined documents related to closed cases, including police and autopsy reports and school policies. GAO also interviewed parents, attorneys, and school officials and conducted searches to determine the current employment status of staff involved in the cases.

GAO found no federal laws restricting the use of seclusion and restraints in public and private schools and widely divergent laws at the state level. Although GAO could not determine whether allegations were widespread, GAO did find hundreds of cases of alleged abuse and death related to the use of these methods on school children during the past two decades. Examples of these cases include a 7 year old purportedly dying after being held face down for hours by school staff, 5 year olds allegedly being tied to chairs with bungee cords and duct tape by their teacher and suffering broken arms and bloody noses, and a 13 year old reportedly hanging himself in a seclusion room after prolonged confinement. Although GAO continues to receive new allegations from parents and advocacy groups, GAO could not find a single Web site, federal agency, or other entity that collects information on the use of these methods or the extent of their alleged abuse. GAO also examined the details of 10 restraint and seclusion cases in which there was a criminal conviction, a finding of civil or administrative liability, or a large financial settlement. The cases share the following common themes: they involved children with disabilities who were restrained and secluded, often in cases where they were not physically aggressive and their parents did not give consent; restraints that block air to the lungs can be deadly; teachers and staff in the cases were often not trained on the use of seclusions and restraints; and teachers and staff from at least 5 of the 10 cases continue to be employed as educators.

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One thing is clear: advocacy is a business that is booming, and this is more telling of the ills of special education than a positive sign of birth of a "novel" industry.

http://www.orlandosentinel.com/os-florida-special-education-advocacy-20111225...

Florida_parents_seek_help_from_special-education_advocates_-_OrlandoSentinel.pdf Download this file

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I've found that physical activity helps my child focus better on demanding tasks (like right before an hour long speech therapy session!) and I know that being physically active benefits my kid.

Here's a systematic review of studies that suggest physical activity benefits children's school performance. However what is missing from the summary below is the timing of these physical activities. Are these kids exercising before? During? academic performance tasks? Does it matter when and where these exercise hours take place?

http://www.sciencedaily.com/releases/2012/01/120102180846.htm

www.sciencedaily.com_releases_2012_01_120102180846.htm.pdf Download this file

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http://www.montrealgazette.com/health/Quebec+failing+families+with+autistic+c...

I thought we have it bad in California -- at least we can get a diagnosis much sooner for our children with autism! (Now, what we have to do to fight for ABA treatment coverage once we get that diagnosis is another different story!)

Quebec_is_failing_families_with_autistic_children.pdf Download this file

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http://www.huffingtonpost.com/2011/12/28/autism-a-year-in-review_n_1171943.html

The comments are fraught with the anti-vaccine camp screaming to get their voices above others who are beyond dealing with "cute" kids and want to focus on what can be done every given day. One of the things I dislike about the whole autism discussion is the massive amounts of quackery and degree of conspiracy paranoia, masking as "trying to save" children.

Timothy Archibald's Echolilia is a haunting portrait series. Expensive, but I think worth it if you're touched by the images.

http://timothyarchibald.com/#/echolilia/echolilia%20-%20personal%20project/1

http://timothyarchibald.com/blog/

http://timothyarchibald.blogspot.com/2009/06/echolilia-interview-100-eyes.html

What is interesting is that if we aren't exposed to these images, we'd probably not notice at first glance that the boy is "any different" given he is doing well in a regular school. That's why I love how images capture glimpses of what our eyes can miss.

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"When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting.

After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

Learn more

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"Parents should be asking what methodologies are being used for their children, what data is being collected because all effective interventions rely on good data collection, how they are being implemented, and ensure that the IEP reflects what those interventions are.  Given that teachers are sometimes demonstrably  unaware if an intervention is efficacy-based or not, parents also need to do some work on their own to determine if an intervention is research based." -- Most Schools Not Properly Implementing and Tracking Autism Interventions by Charles P. Fox http://blog.foxspecialedlaw.com/2011/12/most-schools-not-properly-implementin...

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I get why some parents want to hear PDD-NOS as their child's diagnosis instead of autism.

I was scared to death when I knew that Kiddo is "very likely" on the spectrum.

Even though he shows none of the most severe cases -- he doesn't hurt himself -- he doesn't show aggressive or extreme repetitive behaviors -- his behaviors are signs: the prevalent echolalia and scripted speech, nonfunctional play, inability to play with other children, lack of turn-taking (lack of understanding turn-taking), and yes... lining up things and fixation on certain things (right now it's vacuum cleaners and fans.)

But let me be clear: this ain't the same equation as: "Choosing between Stage 1 cancer versus Stage 4 cancer."

This equation says: "Access to the level of services and treatment."

Imagine living in a place that says "we're not going to take your cancer seriously if this is an early stage cancer -- now, if you have metastatic cancer? Then we'll talk about the different options." That's how it works with autism diagnoses and treatments.

If you don't live in a state that discriminates PDD-NOS from autism in the level of services your child receives....

If you don't have an insurance company that discriminates PDD-NOS from autism in the level of services your child receives....

If you don't live in a school district that discriminates PDD-NOS from autism in the level of services your child receives....

Then by all means -- if you get a PDD-NOS diagnosis -- stay with it.

One of my biggest concerns when we started taking Kiddo for independent evaluations was the PDD-NOS diagnosis. I've read enough from online forums and articles to know that in most cases, PDD-NOS diagnosis is a specialist saying, "I see signs of autism, but I just don't believe these signs are clear enough for me to give this child an autism diagnosis, so let me put down PDD-NOS. Plus, wouldn't this make the parent feel better, I wouldn't have to say the 'A'-word."

PDD-NOS seems to be our regional center's favorite option for autism -- that is -- if they even want to go there instead of something completely different, like "oh, your kid's normal she just needs to grow out of it" or "well this looks like anxiety, once he gets the language he'll be OK."

I don't have warm fuzzy feelings about regional centers.

Kiddo was misdiagnosed by the regional center because he did not show repetitive behaviors and he appeared to have "good" eye contact and so they discharged him with speech delay. If you want to save the money and you live in an area where your regional center does a good job then regional center may be one option. We live in an area where our regional center is notorious for diagnosing spectrum kids with PDD-NOS or misdiagnosing them as not being on the spectrum at all in order to discharge them to the school district when they turn 3 or give them reduced level of services.

We spent thousands of dollars getting the most credible and reputable independent experts because Kiddo appeared social (never mind that he doesn't know how to play), verbal (never mind that majority of his utterances was echolalia and scripted), had "good" eye contact (never mind that these are intermittent if compared with NT children.)

These were the most important dollars we've spent because the schools and regional centers play off each others' diagnoses. Once you get a wrong diagnosis you then have that on the record to "disprove." That was what happened in our case, and from my networking with other parents in similar situations -- to many other parents.

The other day at the park I saw one of Kiddo's former classmates. They used to be in the same morning special education preschool class -- they are both still in the same program but in different classes. The mom said that at first the regional center completely ignored her concerns that her son might have autism. Then she said that she was "lawyering up" (she was not working with a lawyer) and that got the regional center's call-back. They diagnosed her child with PDD-NOS.

When I told her in subtle way of what I think of the PDD-NOS, the mom said that she took her son to a private doctor and got the same PDD-NOS, and she thinks this is right. I didn't want to push, I don't know her well enough. I did, as subtly as I can, tell her that an autism diagnosis often determines the level of services that is provided and that this has an impact on the parents' finances and ability to provide what the child needs as the child grows.

I know of parents who prefer the PDD-NOS diagnosis but if a child is on the spectrum, at least in the state of California the difference between PDD-NOS and autism is the level of services you can receive from the regional center and even from insurance companies. Many of these parents don't realize that as their children enter the adolescent years, even more behaviors and symptoms can emerge because now the hormones come into play, and these teens should still remain a client of the regional center so that the parents don't go bankrupt trying to provide the appropriate behavioral management treatments.

I know at least 2 other families who have girls on the spectrum and they both had the same experience with the regional center that "served" us -- their girls were misdiagnosed. Both went to outside independent experts (independent of regional center OR school districts) to get the formal autism diagnosis. One of those girls is now a teenager and the parents still need regional center services as the girl enters adolescence and hormones have caused faster escalations to melt downs

So I'm not discounting the need for receiving regional center services, I simply have little confidence in their objectiveness of diagnosis.

What I am gravely concerned about are the children who are diagnosed PDD-NOS who probably should receive research-based interventions that can make a huge difference in their prognosis in living an independent, socially integrated (to the degree they desire) life, but they don't receive these interventions because they "don't look autistic enough" to be diagnosed with autism. This to me is like saying someone has stage 1 cancer and we'll do something about it but since it's not serious enough we're not going to aggressively treat this and make sure the patient has the best prognosis in life.

Don't get me wrong: I'm not equating autism as a disease like cancer. Autism and cancer are completely different conditions. Cancer is a disease. Autism is a neurobiological -- and lifelong -- condition (much like depression, which I suffer from.)

Children with autism grow into adolescents with autism then adults with autism. Treatment and management isn't a "one-time deal" and certainly not a "one-time spend."

If you "miss" with cancer, then that cancer grows and eventually kills the person. If you "miss" with autism, which happens most likely with high functioning children (those getting PDD-NOS), then that autism can take over and eventually kills the chance of that person living an independent and productive life.

That's why I was relieved when we received the autism diagnosis for Kiddo: the last thing I want to do on top of all the overwhelming things I have to do when receiving this diagnosis, is to have to chase after the rights for my child to receive the appropriate intensity of intervention he needs to have the best shot of succeeding in life.

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Since kiddo is "newly" diagnosed (well, not really... it's been almost 2 months), we're in the process of gathering all evaluations.

Of course I've seen the literature and all signs point to the gold standard of autism treatment: applied behavioral analysis (ABA) intervention. Research suggests 40 hours a week is the standard. Any less hours than that, you get lesser degree of improvement.

Let's check out the math: $50/hour is the approximate cost of what our ABA provider charges.

$50/hour * 40 hours/week = $2000 a week = $104,000 a year.

$104,000 A YEAR -- are you kidding me?

Now I see how families go bankrupt trying to fund ABA programs for their kids with autism. And why schools and regional centers and insurance companies work so hard to give as few hours as possible. It is INSANELY expensive.

Now, one of the parents I met online got smart and put an ad on Craiglist looking to directly hire therapists to do ABA -- and put a $25/hour paying rate and got over 100 responses.

$25/hour is much better than $50/hour but that's still $52,000 A YEAR cost relating to ABA therapy alone.

So you can imagine my excitement when I came across RethinkAutism.com -- a website I found that provides video-based ABA curriculum for professionals and parents.

It's not "cheap" -- one of the complaints I've read about RethinkAutism from some online forums is that the pricing per month is too expensive compared with buying an ABA manual. Well, then those parents can go buy an ABA manual and read those.

I don't have a problem with people saving money. But videos cost a lot of money to produce especially to produce well. $89 is still expensive for my budget but if I had to do some of this myself, I'd sooner watch a video and learn than read a manual.

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I am on an emotional roller coaster ride.

Some days I feel very strong, very determined, ready to take on the school district and the regional center to "right the wrongs" (all right, maybe that's too dramatic -- how about "right the negligence and / or incompetence"?) that's been done to my child.

Then some days, like this evening, it hit me.

The feeling that things are not progressing. That my child is being left to his own devices and so he lines up toys instead of playing with them. He builds the same long structure of a wall with his blocks instead of houses or castles. Each echolalia I hear reminds me of the steepness of this learning curve, the enormity of his challenge.

Then I feel depressed and frustrated and incompetent.

I feel like I haven't done enough. I feel like this whole process of wrangling with the school isn't happening quick enough. I haven't even gotten around facing off with the regional center, but that's because I've been advised to first get through this round with the school and then we'll tackle the regional center.

Our independently-hired clinical psychologist observed my son at school and she called me, angry. She was angry with what she had seen. My son could not stay on task and kept getting out of the chair and wondering off. He had to be brought back to the activity at the table three times. He kept putting crayons back into the box, if he weren't lining the crayons instead of using them.

And the school still insists there is no concern for my son's behavior.

These are the days when my spouse and I ask ourselves questions.

"Are these people (school personnel) really believing what they're saying?"

Because if they are, then they are incompetent.

These aren't general ed teachers. These are special ed teachers and professionals with masters degrees and licenses to teach special ed.

"Are these people just deliberately saying they don't see it when they know what's happening?"

Because if they are, then they are negligent.

These people are key people in children's lives, the most vulnerable children whose future often depends on what happens in those early years of life. It's a difference between a chance at becoming self reliant and a steady state toward being completely dependent on the parents and later, on the state.

This system is broken because of incompetence and negligence.

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In a "Dear Autism Parents" post, Julia makes a compelling argument about choosing to call herself autistic instead of saying that she has autism.

After I read this, I talked with my spouse about the issue of labeling, and we ultimately are choosing to say that our son "has autism" -- not "is autistic."

The operative word here is CHOICE.

We are choosing this as parents. My spouse said this:

...While I see her point, I still see 'autistic' as being a more 'labeling/defining' term, v.s 'has autism'. Just as I cannot speak from her point of view as a disabled person, she cannot speak from my point of view from the 'outside looking in', as a non-disabled person.

...To me, the term 'autistic' leads to the categorization of the person as a whole, vs. it just being part of what they are.

I also want to explain my position, as a person with a "differently-wired brain" (not autism.)

I became aware of the idea of "false predication" back in 2007, in a personal development program that was a blend of eclectic modern philosophies. I spent the first week learning why I wouldn't want to say "I am {an anything}" because it is giving a partial label to all that one is.

It's dangerous to even equate oneself with a feeling label: "I am sad" versus "I feel sad." As a person who has suffered from clinical depression, I am learning to become aware to say "I feel depressed" versus "I am depressed."

Thus we have become a nation of people who identified ourselves so strongly with labels: "I am a teacher", "I am a mother", "I am an engineer", "I am a nanny" -- that we become lost without our labels if we lose our jobs. We've grown used to labeling ourselves with our jobs, to the point where Europeans laugh at the penchant of Americans for asking as a common question, "What do you do?" right after "What is your name?"

I understand the rationale for wanting to "make acceptable" a disability when that disability is beyond our control.

For example, our son didn't make himself autistic: he was born with a brain that's wired differently. I was born with a brain that's wired differently from "normal" people but this difference leads to depression and I didn't make myself "depressive."

If I wanted to change the world to make acceptable the brains of people with depression, then I will want to proudly call myself a depressive and show how my existence can still be meaningful and purposeful even as I have a very different brain. My reason is to advocate to change the bigger picture, refusing to conform myself as a "round peg" when I'm a "square peg".

Here's a problem though: I don't suffer from severe debilitating chronic depression, the kind that requires me to be on meds for the rest of my life (I don't take meds now, although later this afternoon I have an appt with a therapist because I want to get support I need during this very trying time with the school's mindgames with our son's individualized education). I am not a fully square peg. I am a partially square peg with round edges. There are some holes that I can't slip through but for the most part, I can "fit in" when it suits me.

If I had to be hospitalized every other year, if I needed to wear a pacemaker in my head, if I had ever needed ECT... maybe I will sing a very different tune.

But this is not how my brain was built. Therefore, I can make different choices if I want to make different choices.

Yes, I have depression genes. Yes, I have suffered from depression (including suicidal ideation in my 20s). The depression profile I own is one where I am able to "exist, undetected" among neurotypicals (which, by the way, I'm wondering if these truly exist -- a normal brain, I mean).

So now I get to make a choice: do I choose the purpose of my life to change the dynamics of how people with depression fit into society? No, because I don't believe this is why I'm here and alive. In that case, my choice is based on my desire to fulfill what I perceive as my true goal in life (right now, it has a lot to do with our child.)

Because of my choice, I also have to choose not to get into "other fights" at this time.

I'm not going to announce from the mountaintops about depression, even though I have a public blog about depression, and I'm never shy to admit it and I don't turn away from those conversations. When people are shocked and appear in disbelief that I had suffered from depression (or that I'm an introvert but that's another topic), I don't view this as some failure on my part or shame on my part to "hide" myself.

In fact, I view this as my having been successful in pursuing my ultimate goal, by removing what could have been obstructions or distractions to what I want to achieve with my life.

I use the same logic with our child's autism. He is young now, and therefore we parents have the burden to make these judgments for him. We are making decisions for him and about him and he may one day grow and disagree with these decisions, and choose differently for himself.

My job is to do what I'm able to do to give our child the skills and the tools to "make his own choices." I know we are all influenced in great part by social norms and peer pressure on top of our personal values and upbringing. I can't say that I will succeed, and I will probably make a lot of mistakes. Our son doesn't need to choose what I want him to choose, as long as he is choosing truly of his own volition.

If our child's symptoms are severe -- if he's so obviously different that it will bring about more attention to "hide" or "pretend" than being honest -- if it is obvious that he will likely not be able to make a choice for himself of his own volition -- then, like my previous statements about debilitating depression, I'd probably sing a very different tune.

That's no longer part of the fight. If my child has severe autism symptoms, I will not have delusions that he will go to college, get married, and/or live an independent life -- and so these options are already restricted from me. It doesn't mean that I won't fight for him, or that I won't believe in miracles. It just means I have to allocate my energy, see where I'm needed the most and what I can actually do to help. And this may very well mean I need to change the world itself by being very vocal about accepting differences and use "is" instead of "have" to describe autism.

I never think of people who use descriptors about a disability as "copping out" or "being ashamed of" if they aren't equating themselves with the disability. Even when it comes to brains. I see people like me as "secret agents" or "undercover agents". I'm not ashamed of how I'm built/made. I've learned to use my difference to my advantage. But I choose to be undercover because I have a job to do, and the job I need to do is what is the most important to me.

I have a right to choose this for myself. When my child comes of age, he has a right to choose for himself.

For now, my choices are made based on what we parents have carefully assessed and deliberated to be "best" for our child.

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A parent on a forum asked about whether it was worth doing a psychological evaluation if she suspected her son to have Asperger's. She would be paying out of pocket and as with many of us parents, money is a major factor. Seriously though, is money ever "not" an issue? Maybe only for a very few parents who won't blink if they write a check for a few thousand dollars for an evaluation. But that's not us. That's not most people.

Still, and I'm speaking from personal experience now: I prefer the psych evaluation as the definitive evaluation, over a speech evaluation or OT evaluation.

Our son was recently diagnosed with autism. Prior to this, shortly before he turned 2, he had been evaluated for speech delay from the regional center and was labeled speech delayed and put into early intervention.

Fast forward 2 years.

Our son is 4 years old and has been receiving speech therapy since age 2. He has made little progress. I did everything I could short of becoming a speech therapist myself: believe me, I've looked up the requirements. It's not so much getting a masters degree that daunts me, but the time I know I won't have. Fortunately, I went through the 10 week "Hanen for Parents" (It Takes Two) program. I may not be a speech therapist, but I've learned some tools.

I was as proactive as I reasonably can be to help my son communicate. I became very concerned when my son was injured (scratched badly) at school by another child and he was unable to communicate to us who had done this. I followed my gut, and my spouse and I decided that we were going to find out once and for all what's happening with our son's speech.

We began suspecting something else is interfering with his ability to learn. We took him to an independent (expensive) speech therapist for a comprehensive evaluation. We did this because our "free" options kept giving up and claiming that our son was uncooperative and not evaluable. Of course this should have been a warning sign but you get what you paid for when it's free, and often parents get a crappy deal from the regional center and the school district in terms of quality and comprehensiveness of an evaluation.

Even insurance-covered evaluations may not fare better: we recently went through an insurance covered evaluation and the therapist told me that she could only take 1 visit (1 hour) to evaluate my child. If I hadn't already had an independent evaluation, I would probably not have received as detailed a picture of our child's speech delays as I could have by paying for an independent assessment.

The independent speech therapist was fantastic at engaging our child, who otherwise is very difficult to evaluate (that should have been our first hint that something more than "speech delay" is wrong). Still, it was very difficult to keep our son on task and we ended up having to bring him back for another session.

In both evaluation sessions, the speech therapist brought in another speech therapist at her practice as part of the evaluation. In other words, this speech therapist was evaluating while another speech therapist observed and took notes. This allowed the evaluator to focus on our son. This also allowed another speech therapist's point of view as observer, in case the evaluator missed something.

The speech therapist was very experienced -- here in the U.S. you can tell how long ago the therapist has been licensed by looking at the # of digits in their license number. This therapist had only 4 digits, meaning she's been licensed a very long time ago, and she has been in practice for a long time. She's worked with many children, including children with autism.  In hindsight, we now understood that she had suspected autism, but she knew it wasn't her place to diagnose or to even suggest to us parents. "Autism" is not something you could throw at parents without major consequence, especially if you aren't sure if the parents weren't ready or were in denial or didn't know.

So the therapist did the right thing by strongly urging us to take our son to a developmental psychologist for a comprehensive psych evaluation. She urged us multiple times over 2 sessions. She even said, "if this were my child, I'd take him immediately for an evaluation. I would not wait. Don't wait."

Fast forward a month and a half.

We decided that we needed answers and no more guessing. We paid for an independent evaluation out of pocket, and it was expensive. We could have gone a different way, but at this point we could no longer afford to risk wrong diagnoses.

The clinical psychologist diagnosed our son with autism.

Right now we are in the process of getting behavioral assessments (also out of pocket). The behavioral assessment has already given us parents valuable clues into our son's behavior and explains a lot of what used to be mysterious causes of melt-downs and tantrums for us. The behavioral assessment will then complete the clinical psychological picture, helping us parents finally understand ways we can work with our son to help him learn.

Our lessons learned is that until the true core issues are tackled, we've not been able to gain improvement with interventions that address only symptoms. Now we realize that our son had made little to no progress in the year's worth of "schooling" he received from our local school district, because they never recognized his symptoms of autism. In fact, they failed to recognize what we parents have come to observe in a very short time: that our son uses a lot of escape behavioral tactics whenever a demand was placed on him (going to speech therapy at school would be one of those demands.) They may even have been reinforcing his escape behaviors by allowing him to cry and hide and not participate.

It wasn't until we addressed the core issues in autism as part of the overall speech therapy strategy that we began to make progress with our son. We had made a short term investment in hiring a private speech therapist to come to our home twice a week for 1 on 1 speech therapy sessions: 30 minutes of group speech twice weekly at school wasn't working (this was after one full school year -- the school can't accuse me of not waiting for results to come, I've waited for mre than a year).

In the past 2 months, our son has made more progress in speech than he's made in the past 2 years of center-based interventions that addressed only the speech delay component but not the autism behavioral component.

For us, the evaluation was worth every penny of the $2500 we spent. Because our son's symptoms are "mild", he was continually missed. Our "free" options ended up costing us delays in the right interventions for our son that could have him caught up in speech and language by now. But instead, we are just starting to play catch up. I console myself with, "better late than never."

Saving money on psychological evaluation may end up costing parents' bank accounts more in the long term, through missed diagnoses and overlooking root causes of symptoms. It costs a child valuable time when intervention may be most effective.

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I'm in a holding pattern while we complete one more assessment and wait for the report from the clinical psychologist assessment.

I hate being on hold.

There's the issue of "do I tell? Don't I tell?" about my child's autism.

There's my being sensitive to what my child does, dissecting as "is this him being a 4 year old? Or is this his autism symptoms?"

I vacillate between the feeling of determination to do what I can for my child and the feeling of complete exhaustion to do anything with my child to the feeling of impatience in nothing seeming to happen.

Meanwhile, my child gets older every day. Will his difference appear more visible?

Now that my eyes are becoming trained, I see these differences.

I feel frustrated and upset.

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Reproduced with permission -- please contact the original author for permission if you want to share this on your blog. See original source

You can break down the "cause" of autism to "nurture and nature," where nature is genetic causes and nurture is environmental causes.

Genetic Basis of Autism

(a) The genetic basis of autism has been studied in twins -- and the type of twins. When researchers compared monozygotic twins ("identical" twins) with dizygotic twins ("fraternal" twins), they saw a higher rate of concordance in identical twins.

In other words, if one identical twin has autism, there is a high probability that the other identical twin also has autism. In fraternal twins, the probability is lower but not zero, especially when you expand the autism definition to include the cognitive or language component. [source: Bailey, A., Le Couteur, A., Gottesman, I., Bolton, P., Simonoff, E., Yuzda, E., et al. (1995). Autism as a strongly genetic disorder: Evidence from a British twin study. Psychological Medicine, 25, 63–77]

(b) The familial linkage of autism also supports the genetic basis of autism. Two independent familial studies conducted in 2009 has shown that there is a higher risk of autism in siblings versus the general population. [sources: Geschwind, D. H., & Konopka, G. (2009). Neuroscience in the era of functional genomics and systems biology. Nature, 461, 908–915. Pennington, B. F. (2009). Diagnosing learning disorders: A neuropsy-chological framework. New York: Guilford Press]

(c) The gender dominance (boys are more likely than girls to be diagnosed with autism) of autism further suggests a genetic basis of autism. The general theory is that, like Hemophilia (an X-chromosome-linked disease) is passed from mother to son, autism may also be passed on from mother to son. For a genetics refresher, let me use this designation (a) as the autism gene(s) --

If the mother has the autism genetic variant but does not display classic autism symptoms, then mother is probably:

Mother X X(a)

If the father does not have autism genetic variant, father may look like:

Father X Y

Children with autism in this mating follows this pattern

XX(a) + XY = XX or XY or X(a)X or X(a)Y

It depends on which X chromosome from the mother is paired with the father's chromosome.

• You will have a 25% chance of an offspring with autism, and that offspring will be a boy = X(a)Y.
• You will have a 25% chance of an offspring carrying the autism gene but not necessarily EXPRESS the phenotype of autism unless there is a triggering factor (where "nurture" or environmental causes come in), and that offspring will be a girl = X(a)X.
• You will also have a 50% chance of a genetically "typical" or "neurotypical" offspring XY son or XX daughter.

Is autism a Y-linked disorder? It would explain why there is a higher rate of boys diagnosed with autism versus girls -- but if this is a purely Y-linked disorder then you wouldn't expect to have any girls diagnosed with autism.

(d) Yet there is also at least 1 study that suggests that autism rate increases when the father's age increases. [source: Reichenberg, A., Gross, R., Weiser, M., Bresnahan, M., Silverman, J., Harlap, S., et al. (2006). Advancing paternal age and autism. Archives of General Psychiatry, 63, 1026–1032. Full text http://archpsyc.ama-assn.org/cgi/content/full/63/9/1026 ] In particular from this study:

Offspring of men 40 years or older were 5.75 times (95% confidence interval, 2.65-12.46; P<.001) more likely to have ASD compared with offspring of men younger than 30 years, after controlling for year of birth, socioeconomic status, and maternal age. Advancing maternal age showed no association with ASD after adjusting for paternal age. Sensitivity analyses indicated that these findings were not the result of bias due to missing data on maternal age.

The note on bias of maternal age is relevant because one can argue that maybe it's due to older mothers -- not older fathers (therefore making this more of the mother's genes at play), and paternal age remains the overriding factor.

(e) Scientists have studied various genes that contribute to the spectrum of phenotypes in autism, and these genes are compiled in Chapter 6 of the International Handbook of Autism and Pervasive Developmental Disorders, which you can buy for $559 for the 2011 version [from http://www.springer.com/psychology/child+%26+school+psychology/book/978-1-441... ]. Genes range from NRXN1 (Neurexin 1) and NRXN2 (Neurexin 2) to RELN (Reelin), FOXP2 (Forkhead box P2), CNTNAP2 (Contactin-associated protein-like 2), and PTEN (phosphatase and tensin homolog -- yes, cancer biologists, this is a tumor suppressor gene!), APP (Amyloid beta(A4) precursor protein -- correlates with self-injurious and aggressive behavior). I'm not going to list the entire table here, but you get an idea of the diversity of genes involved and why autism is a "broad spectrum disorder".

Environmental Basis of Autism

(a) The support for the role of nurture / environmental role in autism is attractive because this is where "hope" is made. Think about it: if I tell you that cancer is wholly genetic, I don't care how well you take care of yourself you're going to die of a certain type of cancer, you're not going to feel very hopeful. But if you believe that there are indeed a strong genetic basis in cancer YET you can also wield a certain span of control over your environment to counter the genes -- you feel more hopeful.

I truly think that the subscribing belief to the environmental basis of autism has led to more quackery in the field of autism intervention than if parents wholly subscribe to the primarily genetic basis of autism (but I won't digress on that here.)

(b) For one, the genetic basis of autism has led to the discrediting of the "Refrigerator Mother" theory posited by Bruno Bettelheim (http://en.wikipedia.org/wiki/Bruno_Bettelheim). Mothers did not "create" or "cause" autism in their children by being unloving and aloof.

(c) For another, "environment" and "nurture" are difficult to be scientific about. There are claims of autism being caused by chemical substances (such as mercury found in vaccines or lead poisoning), food allergies (basis of the gluten-free casein-free diets), food colorings -- for a consumer article on the blurry lines of environmental causes of autism read http://www.nytimes.com/2011/08/09/health/views/09klass.html -- but in order for us critical consumers to accept these claims as "true" we need to have good scientific studies that look at whether these "cause" autism.

(d) As an example, the dietary intervention is particularly contentious -- you have parents who claim with utmost sincerity that dietary interventions have been key in their children's improvement in autism symptoms (some go as far as claiming "cure" -- again I won't go there and I won't use that word). They upload videos of their children's "before and after" dietary interventions.

But these children also receive interventions that have been proven through research and replicated in many other studies (translation: behavioral interventions like Applied Behavior Analysis as pioneered by the late Lovaas). So how do we know how much is the diet and how much is contributed by ABA?

Published peer-reviewed studies of dietary interventions have shown that children with autism who have demonstrated a sensitivity to glutein/casein based foods and children with celiac disease will see improvement in symptoms when on the diet. However, if you exclude these children from the study and look at children without these sensitivities, the diet has not shown to improve outcomes in autism symptoms:

J Autism Dev Disord. 2006 Apr;36(3):413-20. The gluten-free, casein-free diet in autism: results of a preliminary double blind clinical trial. Elder JH, Shankar M, Shuster J, Theriaque D, Burns S, Sherrill L. College of Nursing, University of Florida, Gainesville, 32610, USA. elderjh@nursing.ufl.edu

Abstract
This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Data on autistic symptoms and urinary peptide levels were collected in the subjects' homes over the 12 weeks that they were on the diet. Group data indicated no statistically significant findings even though several parents reported improvement in their children. Although preliminary, this study demonstrates how a controlled clinical trial of the GFCF diet can be conducted, and suggests directions for future research.

Notable: "Group data indicated no statistically significant findings even though several parents reported improvement in their children."

IN CONCLUSION

My opinion is that autism is primarily a genetic disorder spanning a wide spectrum of genes that contribute collectively to a particular "phenotype" (how the symptoms manifest, the degree of severity) in a person.

Whatever environmental causes that may "trigger" autism, is likely to trigger a genetic component that otherwise remains dormant, as opposed to "causing de novo" autism that would otherwise not exist on a genetic level. I personally do not believe in children "becoming autistic" because they are eating certain foods, gotten a seizure due to vaccines, or by wearing a certain type of fabric for their clothes. HOWEVER, I do believe that children who have genetic components that can be triggered, may be vulnerable to specific environmental assaults. [in other words, please don't flood me with hate mail, I'm not saying there isn't a link, I'm only saying there may not be a cause.]

Finally, just because parents subscribe to genetic bases of autism does not mean there is no hope. There is a genetic basis of major depressive disorders (I come from a family of undiagnosed depressives and I believe I have those genes and I have suffered from depression) -- but this doesn't mean we don't have bona fide, scientifically-based interventions that produce acceptable outcomes in terms of quality of life. I will never claim that I've been "cured" of depression -- I don't believe this is true for myself. But I have an excellent quality of life and I am happy with my life -- even as I live with depression genes that can be triggered by specific environmental assaults.

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Since I was trained as a scientist, evidence is important to me. I am not going to discount all anecdotal evidence, but I take a hardline with quackery. I was glad to find from Quackwatch a whole section on Autism, called Autism Watch.

Particularly Dr. Barrett has a list of "Nonrecommended Information Sources" -- places where you may visit as part of your own research with autism (I know I have come across quite a few of these) -- but "buyer beware."

I have no problem with hope, don't get me wrong. I only have a problem with false hope and dangerous and misplaced hope. It's one of the reason why I pulled way back once I got past my emotional hysteria when we learned about our son's diagnosis, and I vowed that I would only look at medical literature.

Nonrecommended Information Sources

• A-CHAMP
• Age of Autism
• American Chiropractic Autism Board (ACAB)
• Autism File Magazine
• Autism Recovery Network
• Austism Society of America
• Autism Today
• Autism Treatment Trust (formrly Action Against Autism)
• AutismOne
• David Kirby
• Defeat Autism Now (DAN)
• Forum on Alternative and Innovative Therapies (Lewis Mehl-Madrona, MD, PhD)
• Foundation for Autism Information and Research (FAIR)
• Generation Rescue
• Genetic Centers of America (Mark R. Geier, MD, PhD)
• Good News Doctor Foundation
• Jay Gordon, MD
• Boyd E. Haley
• Institute for Chronic Illnesses
• Jennifer McCarthy
• Moms Against Mercury
• National Autism Association
• National Autistic Society (United Kingdom)
• National Vaccine Information Center
• Neuro Immuno Therapeutics Foundation (Hugh Fudenberg, MD)
• NoMercury
• Safe Minds
• Talk about Curing Autism (TACA)
• The Autism Autoimmunity Project (TAAP)
• Unlocking Autism
• US Autism & Asperger Association (USAAA)
• Vaccine Autoimmunity Project for Research and Education (VAP)
• Vital Interventions Accessible
• Vitamin D Council
• Dr. Andrew Wakefield
• Whole Child Network
• Nonrecommended Books (posted 5/13/05)

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