New here
02 Jan 2017, 11:03 pm
Hello- I found this site through the Neurotribes book.
My son is 7 and was diagnosed with ASD at 3y8m. He has an older sister (8) with ADHD and a younger brother with a rare genetic condition and global developmental delay.
Why my son was diagnosed the DP said he was "on the Asperger end of the spectrum." Yet, he doesn't full meet that definition according to what I had read.
Is it common to still have doubts regarding diagnosis nearly 4 years after diagnosis?
He does have significant learning disabilities and in many ways I can agree with the Autism diagnosis- but there are parts that just don't fit.
He does also have a rare de novo microduplication on his 11th chromosome with unknown significance as there are only 3 other known cases and all three have larger duplications and more needs than he does.
He is in a 12:1:1 class and reading/writing at an early K level (2nd grade). He has a expressive language delay (mostly articulation- he spoke very little until he turned 3) and fine motor/adaptive skills delays (moderate for fine motor and likely mild-moderate for adaptive- he is potty trained but has occasional accidents- a lot of the adaptive stuff he knows how to do but just doesn't do it).
What I don't see in terms of AUtism is a super restrictive interest (he does like unique things like chargers, lights, and anything with batteries- but he isn't hyper focused on these). He doesn't really play with toys although he does like video games. He also doesn't seem to have many stereotypic movements/noises. He does occasionally do a high pitched screech when he's excited- but mostly just at home.
His learning and speech delays don't seem to fit with an Asperger diagnosis...
Socially he isn't interested in kids his age but plays well with his siblings and cousin. He does well with adult interactions. With his parents he struggles with listening and following directions. He shuts down a lot and can be difficult to engage in things he's not interested in. He shows more flexibility at school.
He's good at reading emotions.
He knows when people are upset or sad or happy and he's very empathetic. His teacher last year was always impressed with his ability to figure out just what bugged his classmates and do it at just the right time to cause a scene and therefore cause a disruption in having to do school work.
Not a lot of sensory concerns now (used to be a lot when he was 2-3-4 years old).
His teacher has mentioned a couple times now that she doesn't "see the Autism" but she is also new to teaching.
We go back to the developmental ped at the end of the month for our annual visit and I plan to bring some of this up. He's seen her every 6-12 months since diagnosis and she's never hinted he's outgrown it. I think it's just his teacher's comments that have me doubting again...
I would love any feedback!
03 Jan 2017, 9:16 am
Hi Llom. Welcome to the boards.
I'm on the spectrum and a special educator, so I think I can address your concerns.
It seems to me that you and your son's teacher are looking for autism steriotypes and not seeing them. However, autsitic reality is different.
Right now, the definition for austism is pretty broad. The saying goes, if you've met one autistic person, you've met one autistic person. We're not the same. Your son sound relatively typical of young children on the spectrum.
Your son has the communication challenges, and he has the he has shown some social challenges. (Bugging kids at just the right time does not count as excellent social reciprocity.) It sounds like he had the sensory issues when he was first diagnosed too. Also, he's not playing with toys pretty much at all? That's typical of many autistic people.
You may, at some point, come up with a better diagnosis for him. But remember that "autsim" right now is just a word that describes a cluster of symptoms. It is not a statement of cause. There are likely several different causes behind all the different people who qualify for an autism diagnosis.
Right now, that label is what's getting him services. It's what the school system is able to use to frame the level of support he needs. You might, at some point, want to get him re-evaluated. Often, kids deficit/gift profile is more clear after the age of 7, when they've had more time to become different from their peers. Or you might not. I hope you stick around and get to know autistic people enough to get beyond the steriotypes.
*One note - the label "aspergers" is on it's way out. What you saw from your doctor is the reason WHY the label aspergers is on the way out. My best guess was that your doctor was trying to comfort you by saying that the autism wasn't very severe. Your son, having not talked yet at 3, would not qualify for an aspergers diagnosis at that age. Aspergers was supposed to mean that there is no expressive language delay, except for pragmatics. Also, aspergers was supposed to mean that your IQ is at least average. However, very few doctors were following this rule. It became meaningless. So, probably best to just set that memory aside. It's confusing, but it's simply part of an era in diagnostics that was confusing for everyone. The current system is simply Autism Spectrum Disorder, requiring support levels 1,2, or 3. Of course, I can't tell from one post online. But it sounds like your son is ASD 2. He requires moderate supports right now. That kind of thing is expected to change over a lifetime. The support level, not the ASD.
03 Jan 2017, 9:20 am
For it to be autism the child must have restrictive interests, stereotypical/repetitive behaviors (stims), and sensory problems. I think you are right that your son's characteristics don't fit well with autism. The next question is: what can be done if it is not autism? Unfortunately, that's a very tough question.
On the bright side, since it is probably not autism, ironically the traditional ABA therapy might actually make sense for your son. That's the big irony here. If you live in the developed countries, I wouldn't get rid of the autism diagnosis so fast, since autism has an established system of support, and in my opinion that system of support is actually beneficial for your son. (Sigh...life is so full of contradictions. They design ABA to "fix" autistic children, which is a wrong approach, since autistic children have zero or next-to-nothing connections in the social/verbal areas for the ABA approach to succeed. However, in your son's case, he DOES have those connections.) Some extra help in school would be good, too. Irony of life. Our current autism support system both inside and outside school actually seems perfect for you son.
03 Jan 2017, 7:54 pm
My son is 7 and was diagnosed with ASD at 3y8m. He has an older sister (8) with ADHD and a younger brother with a rare genetic condition and global developmental delay.
Why my son was diagnosed the DP said he was "on the Asperger end of the spectrum." Yet, he doesn't full meet that definition according to what I had read.
Is it common to still have doubts regarding diagnosis nearly 4 years after diagnosis?
He does have significant learning disabilities and in many ways I can agree with the Autism diagnosis- but there are parts that just don't fit.
He does also have a rare de novo microduplication on his 11th chromosome with unknown significance as there are only 3 other known cases and all three have larger duplications and more needs than he does.
He is in a 12:1:1 class and reading/writing at an early K level (2nd grade). He has a expressive language delay (mostly articulation- he spoke very little until he turned 3) and fine motor/adaptive skills delays (moderate for fine motor and likely mild-moderate for adaptive- he is potty trained but has occasional accidents- a lot of the adaptive stuff he knows how to do but just doesn't do it).
What I don't see in terms of AUtism is a super restrictive interest (he does like unique things like chargers, lights, and anything with batteries- but he isn't hyper focused on these). He doesn't really play with toys although he does like video games. He also doesn't seem to have many stereotypic movements/noises. He does occasionally do a high pitched screech when he's excited- but mostly just at home.
His learning and speech delays don't seem to fit with an Asperger diagnosis...
Socially he isn't interested in kids his age but plays well with his siblings and cousin. He does well with adult interactions. With his parents he struggles with listening and following directions. He shuts down a lot and can be difficult to engage in things he's not interested in. He shows more flexibility at school.
He's good at reading emotions.
He knows when people are upset or sad or happy and he's very empathetic. His teacher last year was always impressed with his ability to figure out just what bugged his classmates and do it at just the right time to cause a scene and therefore cause a disruption in having to do school work.
Not a lot of sensory concerns now (used to be a lot when he was 2-3-4 years old).
His teacher has mentioned a couple times now that she doesn't "see the Autism" but she is also new to teaching.
We go back to the developmental ped at the end of the month for our annual visit and I plan to bring some of this up. He's seen her every 6-12 months since diagnosis and she's never hinted he's outgrown it. I think it's just his teacher's comments that have me doubting again...
I would love any feedback!
There are three main prongs to autism:
Rigidity (sensory issues and stims fall under this category as well as the obvious things), Communication issues and Social issues
You are not necessarily going to hit most of the bullet points ineach category--and often not the main ones people like to stereotype autistic kids with.
Sometimes issues shift. For example, my son goes through phases where he is sensory seeking and some where he is aversive. Sometimes he is aversive of some stimuli and seeking for others simultaneously. I obviously can't speak to whether the diagnosis is appropriate for your child. Sometimes you solve one issue in a category but then another crops up b/c the development is different than for an NT child.
I would try to think number one about each of the categories. I would also look carefully at the initial report and see what was highlighted there, and try to think about those things in terms of the categories.
The most important thing though is whether the accommodations, scaffolding, modification therapies, and strategies are working for your child. This is way more important than the specific diagnosis.
My son was diagnosed with autism back when Asperger's was still an option and I was sure this was incorrect b/c my son did not have speech delays, other than pragmatics and echolalia, and is in fact the little professor type. Best I could get out of the shrink was that it had to do with his super severe social delay and apparently he was using HFA as an indicator that my son was not as high functioning as typical aspies in that sphere. That was not part of the diagnostic model, and my own rigidity was triggered by this and I found it very upsetting b/c it seemed wrong. At the end of the day, Asperger's was removed from the DSM, and he probably would have been held to more unrealistic standards than he already was if he had an Aspie diagnosis.
So TL:DR sometimes it is easy to focus on accuracy and precision, and in the end the important thing is that your child is getting what he needs.
