I need help responding to a question about DD's autism dx

[MeaganS]

My 3 yo was recently dx with autism. We haven't told many people, mostly just family and I've received a similar comment from 3 different people that I don't really know how to answer. To quote my dh's grandmother, "But she doesn't seem unintelligent."

 

Now, as a little background, my dd is definitely on the higher-functioning end of the spectrum. So much so that we didn't think she would actually qualify for a diagnoses of autism, but she did without reservations from the panel of doctors who evaluated her. I am struggling a little with actually believing that she has autism and that we aren't just imposters using the label, if that makes sense? I know she does. All of the tests show that she has significant delays in many areas and she shows autistic behaviors, but still, it is difficult to wrap my brain around. So I'm not in denial per se, just still processing it, I guess.

 

Given that, how do I respond? I mean, it basically puts me in the position of either trying to prove that she is less intelligent than she appears, which doesn't feel right, or agreeing with them? In reality, we don't know how intelligent she is. We haven't been able to test her and she's so young that we don't know where she'll have problems or not. And it sort of feels like they are accusing us of calling her autistic when she's not. What would you say?

[Dandelion]

I would gently explain to those concerned that autism has absolutely nothing to do with intelligence. Probably the easiest (and easiest to understand) explanation is that autism is a difference in how the brain is wired. It is not "less than" - it is simply different.

 

If you think it might help, you could also reference some famous people with autism (who are clearly intelligent) - such as Temple Grandin and John Elder Robison. If your family/friends are interested in a more in-depth understanding, both have written books about what it's like to be autistic, and both have websites where they share some of that information as well.

 

HTH!

 

ETA: to clarify, you will find a range of "intelligence levels" among the autistic community, just as you would among the neurotypical population. There are people with autism who are also profoundly gifted, and there are people with autism who are mentally disabled. Based on what I've read, there is no direct correlation between autism and intelligence.

Edited March 8, 2012 by Dandelion

[Crimson Wife]

Up until recently, most people on the spectrum who have higher IQ's would not have received the formal dx unless they were seriously impaired (think Temple Grandin). Instead, they would've been called a "late talker" and/or "painfully shy" or simply "odd". I can think of at least two individuals in my family who are almost certainly undiagnosed Aspies or HFA's. If they were my DD's age today, they probably would receive the formal dx.

[jennynd]

I heard Einstein is an Autism too...

 

http://www.newscientist.com/article/dn3676-einstein-and-newton-showed-signs-of-autism.html

[Tap]

DD5 is PDD-NOS (closest to Aspergers). When I try to explain it to people, I just say something like this.

 

Children with her condition have a broad range of skills. The problem lies in the broad range of skills within one person. They can get stuck on one skill, sometimes for years, and it will not progress as they age (at least not to within the normal expected range). Other skills can be leaps and bounds ahead. The mis-mash of skills causes the problem. For our dd, she has the impulsively of a 2yo. She still tantrums like a 2yo and she acts like the world revolves around her. She is stuck at that mental age. Other skills, like her fine motor skills and physical agility, are way ahead of her age. But what happens, is that she will try to do something like shoot a basketball. She can make about 1/2 of the attempts at shooting a basket ball at full height. Pretty good for a 5yo! But if she misses, her reaction to that, is that of a 2yo.

 

For our dd, she has to be taught things that other kids learn naturally. Things like reading emotions on peoples faces.....she couldn't do that at 4yo. She couldn't look at someone and tell if they were happy or sad. We had to teach her how to tell. Her brain got stuck at a certain level of learning, and it is not progressing naturally.

 

Sometimes we can teach skills to help her progress. But sometimes, her brain just can't learn a new skill due to the mismatch in ability levels within her own brain.

Edited March 8, 2012 by Tap, tap, tap

[merry gardens]

Up until recently, most people on the spectrum who have higher IQ's would not have received the formal dx unless they were seriously impaired ...

:iagree:

 

OP--your grandma is just showing her age and her comments demonstrate what the autism lable used mean. I'll show my age too. When I was growing up, the only person I'd ever even heard of who had autism was non-verbal and required care in an institution. Another person I know, (an in-law, whom I met as an adult) couldn't talk until he had speech therapy, he went through his school years in special ed, he has a lower IQ and very poor social skills, yet he wasn't diagnosed as "on the spectrum" until within the past few years. Very few people were labled as having autism years ago--and those that were, did not fit your dd's description.

 

You might simply mention to your grandmother that the diagnostic criteria for autism has changed.

Edited March 8, 2012 by merry gardens
spelling and missing words

[pehp]

I haven't read the other replies, don't have much time, but wanted to respond b/c this is us too--my 4 yo has 'autism' (dx at 2)--and I waffle on it all the time. But anyhow, that aside, it is what it is, and he is no doubt quirky and spectrum-y, and in your shoes, I would sweetly and kindly tell anyone who makes that comment that autism has nothing to do with intelligence (in fact, Einstein and Bill Gates also may have been/may be on the spectrum), and it is mostly an issue of ___________ with your dd (for us it's auditory processing and severe shyness).

[MamaSheep]

I would just tell her that these days a person's intelligence is not really taken into consideration in making an autism diagnosis. It has more to do with uneven development in social and communication skills and other odd quirks related to how the nervous system processes sensory input and thought patterns, and scientists have realized that those same issues can manifest in people of all levels of intelligence. I will sometimes then give examples from our experience with ds, if it seems appropriate to the situation (like with a grandparent). For example, when ds was in third grade he tested as having a high school or higher level of vocabulary, and read quickly and fluently, but he had a great deal of difficulty carrying on a conversation because he couldn't read the social back-and-forth rhythm and nonverbal cues like facial expression or tone of voice. It wasn't that he wasn't intelligent, it was just that his nervous system has a bit of a "blind spot" in those areas.

[Mergath]

I would just explain that autism is a social impairment, not an intellectual disability. That's pretty vague, but I can't imagine anyone would argue the point even further with you once you said that.

[MeaganS]

Thanks guys, this is all helpful!

[Guest]

I say, get them all together and then have them watch Temple Grandin's movie. They might get a clearer picture of what a HFA can do with a good, strong, support system ;).