Clear as Mud - update on ASD DX - Page 2

[littlest birds]

Our ds has Asperger's/giftedness and lasted about 2 years functioning in public school.  He really functioned well in the classroom and got along great with teachers, who were super-positive toward him.  But he couldn't handle the expectations the older he got, because things get more complex. 

As long as reading was technical, he shined.  When it became a way of acquiring complex information, often independently, he was constantly lost.  When his super-science and math interests looked advanced he seemed to be the smartest kid in the class, but when it came time to complete classroom papers or homework with a little bit of independence he fell apart, an he did have a teacher attempt to embarrass/shame him about this.  (It was isolated but clueless on her part since not only did she offend me, he is completely unable to be embarrassed by her.)  The more focus that was needed, the more the high stimulation of being surrounded by others and the need to finish things on time and follow through started to limit his functioning. 

He has social functioning areas that look more like a 4-6YO and he's 11yo now.  When he was 7yo-8yo his immaturity blended in with the classroom but within a couple of years he was really out of step because he had stayed in that place and the other kids were moving along.

He was bullied and in ways that the teachers didn't really understand.  He was inappropriate to other kids in ways they weren't being proactive enough with.  Because he doesn't self-monitor or understand what everyone else understands.

I know that although officially these dx are distinct there is so much overlap that the distinctions are fuzzy.  For us the difference between an autism dx and an asperger's dx was that ds was definitely not delayed verbally.  (Though he does have many ongoing practical "pragmatic" language delays, he used language quite early and that's what they counted...  But if I take his other advanced areas into account his language was later in comparison.)  If he had been delayed verbally, it would have been autism.  His skills are extremely uneven...  He has definite social problems but I will say that the teacher's observations included in his diagnosis material claimed he did not.  A lot of people have said he was fine.  He is affectionate, friendly, etc.  However, even now, he engages in "parallel play" like toddlers do and he also engages in "parallel conversations" in which what he says has very little to do with what the other person says.  He has trouble with being aware of others.  A few slight variations on the answers given in the evaluation can make an occasional incident look like a pattern or vice versa and these can make a difference.  There were a few conflicts between different observers in our reports, too.

I think you should proceed with this diagnosis.  It is an important tool for you, and you should use it in any way that brings benefit.  You should not expect to be forced to accept one IEP option because that is what they always do with autism.  But those things that benefit classic autism benefit Asperger's too--the supports are pretty much the same.  Use them.

The dx can definitely change with age, anyway, and you can support his issues with any of those dx.  Half the time, I think of my ds as autistic FWIW, because information related to autism tends to also apply to him.  Whatever the dx, I think that age will help you to confirm it as well:  Symptoms become much more obvious with older kids because-- for instance-- social behaviors that are close to normal at 4yo are very atypical at 8yo and 12yo.  Significant gaps will tend to get larger with time and help clarify your ds's needs. 

[Roar]

Originally Posted by RiverTam 

My kids go to the Y and gymnastics and karate, but I want more social skills work for DS. We don't do church and we're not in team sports.

I am wondering if there are many homeschoolers in your area and if there are secular homeschooling groups. If there are abundant activities I think you may find he makes more progress socially than he would in a full time classroom, but it really depends on whether there are people available to socialize with.

[FarmerBeth]

RiverTam, I'm a little curious if your son had separate SLP evaluations.  I have one son (11) who is being evaluated for Asperger's and one son (7) with an expressive language disorder and auditory processing problem.  The SLP evaluation helped clarify the diagnoses for us so that we could be comfortable with having the appropriate label.  Like you said, a lot of treatments are similar across these range of diagnoses, so it doesn't necessarily matter, but it did help define the language disorder vs communication disorder (such as autism spectrum and semantic pragmatic language disorder) divide.  For example, DS3 (7 years old) had an average receptive vocabulary, could follow multiple step directions (receptive conceptual vocabulary) but required additional processing time (kind of like it goes through a translator).  His expressive language fell two years behind due to word retrieval issues (this would be a common problem if you son had expressive-receptive language disorder) and his grammar was also running behind by about 1.5 years (words in wrong order, improper use of pronouns and tenses, etc) but the big defining difference from a communication disorder was that he had very above average use of pragmatics -good turn taking skills in conversation, good eye contact, good use of gestures (actually excellent because he can use them very well to show a word he can't remember) and lots of evidence of using others non verbals to verify his understanding of what he's heard.

Also, besides sensory issues, problems with fine motor skills and some clumsiness are also flags for ASD, Asperger's and Semantic Pragmatic Language Disorder.  The OT assessment for DS1 really helped clarify these types of issues, and we are much more comfortable with moving on to the ADOS from here because of it.  We had a social component on the OT assessment as well, and the observations from the OT and assessments from all the teachers (gym teacher included) and even the bus driver really showed were observations differed and converged.  We had a lot of subtle but real bickering between the pediatrician and the school clinical psychologist (with the SLP almost riding the fence) and the info from a larger range of sources really helped clarify.  That being said, I'm in Canada so I don't have the same cost related worries about evaluations now that DS is in a public school (I did have to pay on previous ones when he was in a private school).

I really wish you the best of luck finding some clarity with the diagnoses.  I know that even if the treatments seem to be in line with what your child needs, it can be stressful if you aren't entirely sure if the diagnoses is on the right track.

[RiverTam]

Originally Posted by FarmerBeth 

RiverTam, I'm a little curious if your son had separate SLP evaluations. 

Yes. We've had two full SLP evaluations and an audiology evaluation. This assessment was conducted by an SLP under the supervision of a psychologist.

2009: The first assessment  done by a psychologist, an SLP, and our pediatrician. The pediatrician and psychologist said he is gifted and has Mixed Expressive Receptive Language Disorder with semantic and pragmatic deficits. The SLP said that she thought it was autism, and told us to get a second opinion on the ASD. We did not have an ADI or an ADOS done at that time.

2010: The second assessment was one year later and the SLP said it's Mixed Expressive Receptive Language Disorder with semantic and pragmatic deficits. This was done mostly to measure progress in speech therapy. The SLP who did it said that she thinks there might be ASD there, but DX isn't really her job. She's just there to treat.

At the end of the school year, the school said get an assessment for ASD, and so we had an ADI and an ADOS done.  That's how we got this DX. The person who did the ADI and the ADOS is an SLP.

I'll think about the OT evaluation and do some reading on it. It's a good suggestion.