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Got Autism? How Do You Know?

By October 6, 2009

Yesterday, I wrote about a new pronouncement from several major American health organizations that autism rates are now at 1:91 for young children and 1:100 overall.  Nearly 40% of children with autism, according to the phone survey portion of the research, are no longer autistic - though they may have other issues such as ADHD or speech delays.

Having made this statement, spokespeople from the CDC and NIMH then worked hard to place those numbers in context, essentially casting doubt on their own findings.

There are good reasons for questioning the validity of those numbers.  And many of those reasons are described in the comments made on yesterday's blog:

...we know that diagnostic stability is inversely related to age of diagnosis. We know that some children are being labeled autistic by school psychologists and the like in order to qualify for services. We also know that "losing a diagnosis" can mean no longer qualifying for services. Also, a child was considered to have ASD if a parent/ guardian reported that "a doctor or other health care provider" had ever said that the child had ASD and that the child currently had the condition. That's not the same as a medical diagnosis.

My son was never in the statistic count for autism dx, because they provided a speech IEP and not the educational. I had to provide the district his DX, prior to getting IU involved (autism support team) and educational goals. This is why the counts are so far off!!

...my severely autistic son has never had a dx

Given the many reasons why a child might have or not have an autism spectrum diagnosis, it's not very surprising that the numbers are wonky. What's more suprising is that that knowledge is not, apparently, driving the ways in which prevalence are being studied.

If you or your child are autistic, how do you know?

Did you receive an "official" medical diagnosis? An "educational" diagnosis? A multiple diagnosis (Aspergers and ADHD)? Were you self-diagnosed? Has the diagnosis been rechecked since it was originally made?

And - to what degree was an autism spectrum diagnosis actually required to get the services you needed?

Comments
October 6, 2009 at 9:22 am
(1) Sandy says:

A comment from a previous topic, Tere, suggested “….we would never know that and perhaps the child’s issues are a direct result of these things.” If a child is not medically diagnosed and other things like lead poisoning (which can appear like autism) ruled out, how would one know what it truly is only based on an educational label? And with most schools other than the few states that have regional centers, all other schools, it’s only a label and if that’s the case, in all honesty one can not say a child has autism with only an educational label. Autism is a medical issue requiring a medical diagnosis. I went further and had other medical tests done, like lead poisoning to name one, to be sure it wasn’t a cause of something else. That’s how I know it is autism and not something else.
I’m not sure how anyone can self- diagnosis a neuro disorder when so many other things can cause those behaviors and delays than autism.

My child has an educational label and a medical diagnosis. He’s had 3 medical diagnosis, one at age 3, age 6 and age 9. I needed the medical diagnosis for private insurance to cover SP and OT however those private services of course did their own evals per their service. A diagnosis also on paper can show your child’s weaknesses and strengths and the progress as the child grows.

October 6, 2009 at 9:32 am
(2) autism says:

Sandy –

Since my son has no physical problems beyond gross and fine motor delays, and services would be the same no matter what his “official” dx, I didn’t feel the need to have multiple medical tests or diagnostic evaluations (once I’d had the original dx confirmed).

I supposed it’s possible that a different set of docs or exams would give Tom a different dx (NVLD, Aspergers, etc.). But IMHO, the set of letters after his name don’t make a lot of difference if they don’t impact the appropriate treatment, placement, etc.

Again, though, every situation is different. In your case, it sounds like official dx means everything!

Lisa

October 6, 2009 at 9:53 am
(3) Sandy says:

I understand what you’re saying about your son and some people wouldn’t find the need for a second diagnosis after they had the first. However, those within the public school system, when they eval for that label every 3 years, many need that additional private to counter what the school has given, and that not only goes with the autism DX, but with OT and SP, getting a second opinion aside from the school.
We know kids loose their labels/ diagnosis and you’ve had a topic about it. No longer fitting that set label/ DX criteria, does that make that person less having issues that surround autism? As many kids get older, the can learn better coping skills, and so on but still things greatly effect them.

I don’t look at additional diagnosis as what’s after the child’s name. It’s a tool, and a second opinion and yes, it can mean everything depending on the public school a child is in. Why would I rely on any school to form goals and services with out a medical opinion? Plus a medical diagnosis is what is needed to say your child has autism. I’d also go so far to say that a child will sooner not fit the criteria for the school special ed label than they would the medical diagnosis, then placing the child on a 504 than an IEP. Happens all the time right around middle school age. If you don’t have that second opinion, then you end up with a 504.

October 6, 2009 at 10:01 am
(4) autism says:

actually, my experience was almost the opposite! my son was placed in an “autism class” because of his dx – yet his actual learning style is not typically “autistic.”

Teachers of kids with autism are generally taught to use visual teaching tools, extremely rigid schedules, token economies, food as a “reward” for good behavior. They also offer few opportunities for enrichment, because (in theory) kids with autism just can’t handle changes in routine (though Tom has no problem with that).

My son happens to learn in a variety of ways (aurally, kinesthetically) as well as visually. And we found that he became fixated on token economies and little rewards – with little interest in the work that went into earning them.

Had he simply been taught based on his individual learning style (as he is now), I suspect he would have done much better in school.

Lisa

October 6, 2009 at 10:39 am
(5) Sandy says:

Well, in my experience, in Early Intervention my son was placed in self contained. You have to remember in my state they can term the IEP autism w/o that medical diagnosis and when I told the team I was planning to get a med. DX, they about blocked the door, told me all the reasons why not to go get one and they were so convincing in this, I wondered why they’d be that persistent. Come to find out, when Kindergarten time came, there was a great need for a medical DX and thank gosh I had it and didn’t listen to what they were telling me. To their surprise, I had that DX. My kid was in self contained, all of a sudden upon their evals they decided full inclusion was the best option for my kid with no transitioning to that. So he’d been going from self contained of 5 kids to inclusion of 30. They also decided he only needed a few goals and next to no services. My school district wouldn’t even tel me if they had self contained choices. The only choice offered was inclusion. Needless to say, I retained my child a year and applied for Charter schools all around my area. My kid has never attending this school district other than EI.

Then you have parents, no matter what the medical Dx is or educational label, they either are dead set on inclusion or dead set on self contained and wont budge a bit. Neither the DX or label makes a difference. I myself was no big fan of inclusion, and certainly not cold turkey.

A medical diagnosis doesn’t really help with types of learning or structure provided. It has more to do with helping with goals and actual services the school needs to provide and where that child fits IQ-wise and developmentally. No school told me my child is 2 years delayed, a medical diagnosis did and so far that has stayed consistent with him and I only know this due to the medical DX. Had I not had medical DX’s every 3 years, I’d be guessing he was consistently 2 years delayed. I also wouldn’t be able to track his progress as well and having it on paper means alot more than a parental guess.

October 6, 2009 at 11:44 am
(6) Bruce Vanicek says:

For the children who lost their diagnosis, don’t forget to consider children like my son who lost his diagnosis because he recovered from autism through biomedical intervention.
It is a shame that our health agencies don’t have confidence in their own ability to count.

October 6, 2009 at 12:43 pm
(7) Bill says:

I read an article in Scientific American on Autism many years ago, and set the magazine down perplexed that much of my perspective on the world was autistic. A few years later a brother called me and informed me that he had been professionally diagnosed with Asperger’s Syndrome, and he suggested I probably had it too. I did not seek out a diagnosis, but started researching everything I could find about autism and Asperger’s; it fit so precisely with my problems and especially one son’s problems. I would take the online assessment exams and would fall off the chart I was so extremely autistic. Not until I had serious nervous system problems did I discuss the possibility of having AS with a professional, and after the second session I asked if he thought I had it, and he responded with a wave of his hand which implied “was there any doubt?”
It sure would have been nice to know my son was autistic when he was mainstreamed in school! Too late now, he is an adult, and there is no point in getting the diagnosis now; it would simply become a “pre-existing condition” he would have to declare on health insurance forms.
I suspect it is important for a parent to get a professional diagnosis for autism spectrum disorders. The best course of training for autism caused by brain damage would be totally different than the training for essential autism.

October 6, 2009 at 1:06 pm
(8) Paula says:

Well, my son has a medical diagnosis of autism. When he was 3 1/2, his daycare approached us with their concerns that he wasn’t interacting with the other kids, that his speech seemed delayed, and that he seemed to have some sensory issues as well (he is our only child, so we didn’t pick up that some of his “personality quirks” were not normal). From there, we had him evaluated by CDS. They rated him moderately autistic on the spectrum. He entered a special needs preschool, and six months later was diagnosed by a pediatric developmental specialist as autistic.

My son is now 6 years old and in a special ed classroom for first grade. They have tried some mainstreaming with “specials” like music, gym, reading, etc; but he has a hard time in a large classroom full of children and complains about the noise and then starts to act aggressively. He still has a hard time focusing long enough to follow complex directions and is still very hyperactive.

In our situation, I am glad that we got a medical diagnosis. I found it does make a difference when it comes to services, programs, funding, etc.

October 8, 2009 at 4:52 pm
(9) Karen P says:

My son’s official medical dx was not recently up until this year and he is seven. His Pediatrician truly admitted he himself was not familar with my son’s behavior and really didn’t make much of it for years until I pointed out the fact that his school dx him. Edcuational dx was much earlier and he has been in the same Special Education class for three years now. It’s only now that we need a dx of “full blown” Autism to have my son qualify for any services.

October 10, 2009 at 3:39 pm
(10) Jennifer says:
October 30, 2009 at 11:37 am
(11) princess-bluey says:

I just did the online Autistic Spectrum Quotient test & I got a score of 36. What does this mean? I haven’t been medically diagnosed with the condition, but a lot of my idiocincrasies would make sense if I am, you know what I mean?

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