Aspergers No Longer a DSM Diagnosis. What Replaced It? Questions About Son.

In My Humble Opinion
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My son was diagnosed with Asperger’s type, or high-functioning, autism at age 5 or 6 in kindergarten. He’s 16 now and in tenth grade.

He received intensive therapy from birth (due to an extremely premature birth) through 5th grade. He is very functional and has been ‘mainstreamed’ since early 6th grade. At that time I was told he was academically successful and he was dis-enrolled from every support program at that meeting. But at that same time, they also offered to let me enroll him in the ‘special’ campus. So, he lost his IEP, but kept the diagnosis.

I chose to keep him in the regular public school because I did not want him in a protected environment. I wanted him to function in the real world, plus the special school had no extracurricular activities and he plays an instrument (beautifully- I think he may have ‘perfect pitch’, too).

Truthfully, he has floundered a bit since then, especially in math (which was predicted in every evaluation he has ever had done).

We made up for the lack of support by doing it ourselves. Truthfully, my poor husband could probably teach high school math at this point- he communicates regularly with the teachers about what coming up next, reads ahead in the texts and if he doesn’t understand the stuff himself, goes to the textbook in-line center and learns it so he can then teach our son. This is a near daily occurrence. We were so looking forward to weaning him off daily homework help during high school but that’s just not happening.

These two studied 2 hours a night for three nights in a row for the big 9 week test. My son got a 55.

My son is so down about this. His point is that if he studies, he does poorly and if he doesn’t study he also does poorly. The school’s solution is to bump him down a level which I guess makes sense since he doesn’t seem able to pass. On the other hand, I think his difficulty should not be cured by just giving easier classes. I think we need to find out what is wrong and fix it. Perhaps the problem is that his math teacher is also the gym coach (not that gym coaches couldn’t be good math teachers, but is this one a good math teacher?).

He is a loner (which does not bother him) and has very uneven school performance- excellent in some areas (music, foreign language, chemistry) and very poorly in others (math and English). I’m wondering if his uneven performance is due to the kid, the teachers, the diagnosis or… what? For example, he loves to read and write stories. He delights are reading stories on-line and finding spelling, grammar, and syntax errors. So why can’t he pass English? He has a remarkable memory, so why can’t he recall the math formulas?

I have asked the school to do a complete evaluation, but they seem to be in not much of a hurry to do so. It’s been so long since I have dealt with the school on his autism stuff that I’ve forgotten the rules- I believe they have 30 or 60 or 90 days to respond to my request. They can accept or decline.

If he gets evaluated by the school, will they do it properly or will they be inclined to not do much so they do not have to treat? He got such great help from them in the past, but that was 5 years ago. I hope they come trough again.

I also want to get him to a complete and independent neurodevelopmental exam- one not affiliated with a school or clinic that also sells services. I’m afraid that if they sell services, they will be more inclined to diagose. These are expensive and hard to find. I found a clinic associated with a university that can see him in September.

I’m ambivalent about the diagnosis myself, but I’m too close to the situation to see it clearly.

If there is no longer and Asperger’s diagnosis, what will they diagnose him with? Does he even have a diagnosis anymore?

If you were to ask me what is different about him, I could not really say. Everything he does is normal to me. I am willing to admit he’s a quirky kid. He’s socially clueless, virtually friendless (Adults love him. Kids do not), incredibly noisy- he hums, clicks, whirs, sometimes has verbalish tics like throat clearing, and talks incessantly. Messy. Forgetful. Personal hygiene could use improvement. Of course, he has favorite topics, too, but it’s not like when he was little and we had to set a timer to get him to Not Talk About Harry Potter For Just 15 Minutes- LOL! He would just switch to Spider Man or long monologues about tropical storms. Now it’s video games and religion but he’s much more flexible and has entirely normal conversations, too.

On Monday, I’m sure about the autism diagnosis. On Tuesday I’m sure he is not anything but a normal teen. On Wednesdays, I just don’t know what to think.

I was just reviewing his past evaluations and had forgotten what an odd kid he was. Kinda shocking, really. He’s an awesome teen, though.

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Autistic Disorder, Asperger’s Disorder, Childhood Disintigrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) were all placed under one umbrella term, Autism Spectrum Disorder with different severity levels regarding how much support the person requires. The APA says that “[a]nyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis.” More information from the APA on the change: Autism Spectrum Disorder

Here are the DSM 5 criteria for Autism Spectrum Disorder.

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You haven’t said what level of math. Are you talking about basic algebra or trigonometry or first year calculus?

First thing - some people are simply not good at math and it may have nothing to do with asperger’s or anything else. I’m (allegedly) neurotypical and yet I struggled most of my school years with math, finally going out in a blaze of glory in pre-Calculus with a sparkling 28% on the mid-term despite spending hours a day on the homework and 3-4 hours a week of one-on-one tutoring. It wasn’t for lack of effort that I failed, and I completely understand how frustrating it is to be in your son’s position.

A formal evaluation of his math skills is probably in order. Part of my problem was that even when I did get the concepts I… was…very…slow…in…performing…calculations. Part of the solution was to get some extra time for testing for me - which, given this all happened before IEP’s and provisions for kids with learning disabilities had to be done under the table, as it were, and if my math teacher’s had been caught allowing me to continue my math testing into my lunch hour we all could have been in a lot of trouble. When the timing issue was solved, though, I actually started passing my math classes.

I never did progress to calculus, but I did become competent in math up to that point, which is what is most essential to life as an adult. It also helps that we have hand-held calculators these days - back when I was in school they were forbidden, so on top of everything else I was struggling with paper and pencil and log tables.

While that is a laudable attitude in many respects this may not be fixable in the sense you’d like it to be. As an example, nothing will ever make me particularly good at math. What “fixed” it in my case was re-evaluating goals from “push her into honors math because she’s so good at other stuff surely she’s capable” to “she needs to be competent in the sort of math she’s most likely to need as an adult in our society”. That was an attainable goal for me and one at which I succeeded.

Don’t get me wrong - I’d love for you to find a magic switch that enables your son to suddenly excel in a subject he’s struggled with. Sometimes those can be found. I just want you to consider that may not be possible in all cases.

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Thank you, pravnik. I’m going to look at that more closely but scanning it looks like I guess I have a “Autism Level 1” kind of kid.

And thank you, too, Broomstick. His experience parallels your story of dealing with calculus- a lot of work with little reward. He was in algebra got bumped down to something called math models.

His past evaluations predicted math troubles and also commented on the long times he needed to get work done. He is and always has been very slow to get homework of all kinds done. In the past he was allowed to go to a quiet room and given extra time during testing, but lost those accommodations after 5th grade.

And thanks for the advice on the ‘fixability’ of this problem. I sure don’t use algebra in my job, so maybe it’s not all that important to his future.

It’s nice to get some perspective on this. I recall being so streesed with him as a small child because of all his developmental delays; he was so far behind on his milestones. Someone once told me “Ya know, when he’s 15 no one is gonna say ‘My gosh, he acts like such a 14 1/2 year old!’”

I think I will push for the two evals this year- one at school and also the private one. I just want to maximize his strengths and minimize his weaknesses as much as possible and I’m worried about him losing heart over these bad scores. He talks about going to college for chemistry (and I know these kind of goals change with time), but his math failures are coloring his opinion of his worthiness.

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Just a note: true childhood disintegrative disorder is called Heller’s syndrome. There are other kinds of disintegrative disorders eg, Retts syndrome. I’m not sure if any of them are considered part of the new “ASD,” because children with autism do develop, just differently, and usually more slowly.

There’s a learning disability that is sort of the math version of dyslexia. IIRC, it’s called “dyscalculia,” and people who have it have the same trouble parsing math problems that people with dyslexia have parsing phonemes. It’s not a question of memory. Your son probably excels at arithmetic, and may even be able to do calculations in his head-- those are memory tasks. The math disorder kicks in once the higher maths, like algebra, begin.

I always wondered if I possibly had a mild case of this, because I was worried I wouldn’t finish college, since I couldn’t get through the basic pre-calc course that was required. I took advantage of every possible tutor and study session, and still had to drop it twice. Then I found out I could take Finite instead, which is mostly stats & probability. I did great with the logic concepts, and set theory, Venn diagrams and all, and most of the actual calculations never got harder than basic algebra. There was a business applications section I bombed, and I got a C on the final, but I did pass.

That is one thing your son needs to think about-- if he wants to go to college, he will have to pass some kind of math course. If he has a diagnosis of dyscalculia, he might be able to get special help with the class from disabled student services without needing to go into the whole autism background (I’d still tell them), and the tutor will be someone who knows math, and not someone who approaches it as a problem related to autism, which it may not be. He may just coincidentally have both conditions. If he does. He needs to be tested.

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I can solve for X but I lost math as soon as we started simplifying large equations. I never attempted pre-calc in high school, and it didn’t hold me back at all. I didn’t get the best grade in the one true math class I took in college but after that it was all statistics, geometry and basic trig all of which I was good at.

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Frankly, FWIW, I would stop worrying about the problems with math and focus on the lack of friends. I think the latter is a much bigger problem, both in regards to future financial success as well as happiness, fulfillment, and physical and psychological health. I used to think I had Aspbergers, but then I took an online test for it and failed - turns out I don’t have any diagnosable issue, I’m just kind of jerk. I actually think they should put that in the DSM; something like Jerkiness nervosa, or maybe McEnroe Syndrome. Anyhow, I did spend some time on the aspie sites and saw a Ted talk about it, I think spending more time trying to connect with other folks who could really understand your child be beneficial to him. In my brief encounters with the subject, I found people with Aspbergers to be really a good group of people in general just very misunderstood; they just do not process the subtleties of social interaction in the way that most people take for granted.

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Thanks for your opinion. He does well with adults (he’s very adult-like, for a kid; very verbal. It gets commented on a lot.), but not so well with kids his age. He has 3 friends and social outlets through music. He really doesn’t like to hang with folks (read: kids) so much because it interrupts his day/thoughts. I’m hoping with will be less trouble as he ages and everyone is an adult.

good luck to you!

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Been there, done that, although I haven’t specifically been diagnosed as having Asperger’s.

Did OK with algebra I but algebra II gave me so much difficulty that I had to retake a semester. Fortunately, I knew my teacher for the second attempt quite well. She was the faculty advisor for the club I was in.

As for English, part of my problem was really bad handwriting. The thing that really helped me, other than typing essay papers, was memorizing word lists with Mom. This was after needing summer school two years in a row. Although I did poorly on one essay my Senior year – teacher refused to believe that West Side Story is a modern update of Romeo & Juliet – I didn’t need summer school again.

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Sorry if this was already mentioned:
The Master speaks.

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Thanks for that.

I was always ambivalent about the diagnosis. I’m sure my son’s primary problems stemmed from his extremely premature birth so I never had to wade too far into that Wakefield/immunization issue.

The psychologist had to decide between a diagnosis of Pervasive Developmental Disorder or Asperger’s. I preferred the Asperger’s because it seemed less negative, but was happy to have either and that neither diagnosis came with meds, like ADHD.

Truthfully, I didn’t really care that much what they called it as long as he got therapy he clearly needed. He had excellent therapy since birth (some of which I developed and instituted myself) and the Aspergers diagnosis did not get named until he was 5 or 6. I felt he was placed on the autism bandwagon, the diagnosis du jour, but as long as he got what was needed, I was content.

There has been some talk about kids who ‘age out’ or ‘outgrow’ autism. Perhaps that coincided with the change in the DSM and/or those parents don’t want the other diagnosis. There was some talk when he was younger about ‘preemie baby syndrome’ for these micro preemies who seemed to have similar trajectories regarding health and development.

Looking at his old evals, I really am struck at how far this kiddo has come.