Autism And

Autism

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It is hard enough to understand and cope with autism. When your child has other conditions comorbid with the autism, it can both greatly increase the challenges you face in managing your child, and muddy the waters for understanding autism in the first place. Many of the controversial claims and treatments for autism, appear to stem from confusing together autism with those other conditions.

For example, some autistic people also have mental retardation. Yet how many times have you had to explain to people that being autistic doesn’t mean you’re mentally retarded? (You see the same attribution error in regards to genius; some autistic people turn out to be geniuses, leading to unfounded claims that every autistic person is actually of well above average intelligence, a claim I still often see on parenting forums and have written about previously.)

Sometimes people mix together the fact that their own child has allergies or sensitivities to certain foods, with the fact that their child has autism, and go on to claim that every autistic child would benefit from a similar change in diet (even when you point out that your own autistic child has been tested for such food sensitivities and does not have them).

Quite predictably, the list of conditions and problems that co-occur with autism, looks endless (though some conditions are not meant to be co-diagnosed with autism, such as ADHD, although this may change in the future). Some co-conditions are common (such as seizures), and some comparatively rare (such as Tourette Syndrome). For each of those variations, you may need to make adjustments to therapies and medications. Though from my own reading thus far on the topic, it would appear that autism is considered the “dominant condition”: It’s hard to treat other conditions if you don’t take into account the autism, and the autism so widely affects a child that it can often hide or disguise other conditions. That is not necessarily a problem though, if the therapies already in place to improve autism, also address the other complications.

A good developmental pediatrician, will do their best to figure out every condition affecting your child, by a range of tools (including blood tests and extensive questioning and observations). This is one of the reasons it is so important to not simply self-diagnose or diagnose your child without professional guidance. It can be hard to tell the difference between autism and other conditions, let alone between certain common aspects of autism and similar behaviours that are independent conditions (for example, is your autistic child obsessing, or do the have obssessive-compulsive disorder). In turn, that understanding can affect whether you should try to eliminate, modify or ignore various behaviours.

Being conscious of this problem of figuring out what – if anything – is comorbid with your child’s autism, helps to untease many of the otherwise avoidable confusions and disagreements in the autism community. It’s part of why we have to be so careful about moving from the statement “my child improves on this treatment” to “all autistic children will improve with this treatment.” For all the anecdotes, for all the studies, we must first and foremost always respond to the child in front of us. Those are good starting points (obviously studies rank above anecdote), but we must be ready to observe the results these approaches have on our own children, and respond accordingly. (For those of you wondering how you are meant to measure the impact of various treatments on your autistic child, I’d point you in the direction of ATEC as a great option.)

I’d be interested to hear about if your child has a diagnosis of “autism and…”, and how this has impacted (if at all) on the therapies or medications you use with your child.

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17 Responses to Autism And

  1. mamafog says:

    My daughter “just” has the diagnosis of autism, at least so far. When she was first diagnosed I was surprised how many people said, but she doesn’t seem retarded…
    That ATEC link is really useful, thanks for sharing it. I have to think about some of the questions a bit more…

    • Hi mamafog. My son only has autism too (as far as I know, maybe years from now something else will become evident as the autism gets less severe).

      Good luck with ATEC, it takes a bit of getting used to, but I’ve found it to be quite an insightful and encouraging tool.

  2. Jack says:

    We have seen a huge increase in our sons language since we started speech therapy. We started off with PECS, but he is leaving that behind as words are starting to come in. The speech therapists is pretty sure he has dispracsia and has started (just) linking two syllables together. He tried really hard with his speech therapy and we think he enjoys it.
    We haven’t tried any major diet changes, except the addition of Omega 3 capsules.

    • That is fantastic news, I am so happy for you!

      Our son also started off with PECS, and then left it behind as his verbal skills improved. It’s a wonderful thing to hear your child talk; it is (aptly) beyond words 🙂

      • Jack says:

        yes and no. He mainly brings us the potato chip bag and asks for ‘more’ ….. But you are right it’s great to hear him say new words.

      • lol, every little step helps. It will build on itself. The number of single words grow, then they put two together (maybe “more chips”), then one day – with a lot of hard work on both your and his behalf – you may even get to those precious sentences. You’ll probably find he seems to making little or no progress for long periods, then you’ll see sudden and important leaps every so often. I hope so anyway, as you well know by now, there are no guarantees, just a lot of hope and hard work.

  3. Jack (Wife of Jack) says:

    What sort of blood tests did your son have? Did this help in the diagnostic process? Our doctor never mentioned anything about blood tests or food sensitivity testing. Is this something that is easy to rule out?

    • The blood test was to see if she could identify any of the known genetic causes of autism, such as Fragile X syndome (if he had tested positive for that, just as an example, it would have meant there was about a 50% chance that any future sons I had would get autism). Some of the known genetic causes have consequences for the specific treatments and long-term expectations for the child. She didn’t find any known genetic causes, which she said was a good thing for our future children at least.

      Food sensitivity is not linked to autism, there is just a “movement” of people who use a gluten-free/casein-free diet on their ASD children and claim improvements in the child’s autism (and often further claim that all autistic children would benefit from such a diet). It is true that in the children who were pre-tested for such food sensitivities, there were consequential improvements in behaviour once the allergen was removed (that’s not surprising, that would happen for neurotypical children too). But there is not consistent or good evidence that those special diets improve the autism of children without such sensitivities, the usual finding when the studies control form placebo effect, is that it is just that – the placebo effect. (If I keep going I’ll turn his reply into the length of a blog post, but I think you get the gist of it.)

      My son had had very bad eczema and had blood tests to find any allergens at a younger age (pre-diagnosis). They checked for everything, including dairy sensitivity, other food allergies, even reactions to grasses. It came back that he had no allergies at all, the eczema would (and did) just get better over the years.

      I’m not clear on how to rule out food sensitivities beyond a blood or skin-prick test. Just removing something from a diet and trying to observe improvements, is not a good way to check (confirmation bias, placebo effect, correlation vs causation, etc). I do know there are some dodgy “natural practitioners” who offer completely bogus ways to test for allergies and sensitivities, so make sure (if you decide to test your child) that you go via your pediatrician or doctor. The blood test and skin test are hardly pleasant ways to check, but they are the accurate ways to test.

  4. Jack (Wife of Jack) says:

    Sorry about all the questions, we have Autism + Speech Delay + Suspected Dyspraxia.

  5. Melissa says:

    My daughter only has an Autism (PDD-NOS) diagnosis. Her neurologist has mentioned keeping an eye out for ADD/ADHD, but it’s not something that will be diagnosed until she’s a little older (if at all). We did PECS with my daughter … but now that her speech is really starting to manifest itself, we mostly use it augmentatively… when speech is harder for her. I have spoken to her speech therapist about speech apraxia, and it was too soon for her to be tested for it.

    • Thanks for sharing that Melissa. It’s interesting to also see how widely PECS is being used, and so successfully too. It does have a very good track record (my son’s speech therapist had to sell me on the idea before I’d try it with him, since I had some concerns about “replacing” speech with pictures). I first heard about it through another mother who said it changed her son’s autism for the better in a dramatic way and she wished she’d used it sooner with him (he was about 7 when I met her). (I’m now tempted to write a future post about PECS, the concerns that I had about it before trying it, and how well it worked for us.)

  6. Melissa says:

    My daughter was 17.5 months old when she started therapy at home and about 19 months old when she started school/speech/ot… pt started a drop later. In school, because she was non-verbal to begin with, and we really had no way of knowing what she knew/understood/etc etc etc. they used a total communication system with her that included picture schedules/PECS/beginnings signs/switch box… really anything and everything that could be used as communication. Just to see what SHE would take to. Keeping in mind that until she was nearing 2, she didn’t point. She started ABA right after she was 2 (before then she wasn’t actually diagnosed with PDD-NOS, just severe global developmental delays, though I’m sure the diagnosis was suspected) and it was actually right before then that she began to point, and we realized that her receptive language was starting to come in (or maybe it was there and we just didn’t know it because she had no way to show us)… THEN PECS became an option. And use it we did. She continues to have a pretty major speech delay. And it frustrates. But coming from the “below 1st percentile” to having speech… even if it isn’t conversational or “quite there yet” is a beautiful thing.

    • What a journey! And I love the approach of introducing the child to lots of different methods and seeing what they responded to. There are such variations on that issue; do you introduce one method and stick at it for ages before trying the next, do you decide before hand just to try the one (based on whatever, be it research or the parents preferences etc) and stick at it as the only option, do you try lots of things at once and keep going with them all, or just continue with the one that shows the best results. I think it’s so important to tailor the method to the individual child’s strengths, but trying to figure out what those strengths are is half the battle sometimes. Throw in various controversies over treatments, and it’s made all the harder. It’s so important though not to feel over-whelmed to the point of inaction, which some parents do feel. It sounds like you sussed it out 🙂

      • Melissa says:

        It HAS been a long journey… My daughter just turned three (I still can’t believe THAT) and her pediatrician suggested evaluating her at 15 months old… so over 1/2 her life. (and why I trust her pediatrician so much) Feels like forever and the blink of an eye at once.

        I think total communication is not only the philosophy of the school she is in, but the best advice of our individual therapists who happen to have a lot of experience. Far more than we did. The point was really that she was so young that neither they nor we knew where she was going to go as far as communication or how much she’d eventually understand. So flood her with it. And there were certain therapies, like PECS and PROMPT, that while had success in the end depended on skills (like pointing and her ability to tolerate touch around her face) that in the beginning made simpler modes of communication more useful. But they weren’t “ruled out” ever. As it became clear that she could make (and understand) sounds, what her teachers and therapists expected from her certainly changed as you would expect, I think.

  7. nostromo says:

    Just a dx of classic Autism for our son but our daughter has a dx of Dyspraxia. Both seem to be correct. Our paed does have a chart though that has dyspraxia on a line with autism FWIW, that seems to be his opinion I think as i havent seen anything similar elsewhere.

    • It’s thanks to your comment on an earlier post that I started looking into the specific issue of comorbid conditions – and I learnt a lot and found it very interesting – so thank you nostromo!

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