Muddying the Water: Alleviating Pain ≠ “Recovery”

A few months ago I wrote about how, once we were given an autism diagnosis for our daughter, so many of the things we believed were uniquely and wonderfully “Emma”, were suddenly thought to be examples of her “autism”.  Things were either categorized as a deficit or a “splinter skill”.  Splinter Skills and Other Words We Use concentrated on talents, interests and abilities.  My friend, Chavisory reminded me yesterday of the physical issues often mistakenly believed to be part of autism.  Things like allergies, insomnia, GI problems, epilepsy and food and eating challenges that often people who are Autistic have, but that many in the general population also experience.

Chavisory mentioned in her comment, a NYTimes article about a drug trial thought to minimize social withdrawal in Autistic people and those with Fragile X.  She wrote, “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” Chavisory’s point is an important one.  This distinction is critical.  Not only because researchers are often trying to treat something that is actually something else, but because it confuses caregivers into believing they can “cure their child of autism”.

When a non autistic person has food allergies or insomnia, we say they have food allergies or insomnia. When an Autistic person has a food allergy or insomnia, many believe it to be yet another aspect of their autism.  People talk about “co-morbid” diagnoses of an Autistic person as though it were all folded into the autism diagnosis.  The problem with all of this is, it muddies the waters and makes people misunderstand what autism is and isn’t.  And it opens the door for many to believe they are curing their child of autism.  Taking care of allergies, GI issues and insomnia will not make an Autistic person non Autistic, however it will make them feel a lot better.

When an Autistic person with food allergies or debilitating insomnia, who also has hyper sensitivities to texture, taste, smell and sound, is given melatonin to help them sleep or a diet that complements their specific constitution, it stands to reason they will exhibit behavior that reflects that.  When anyone, who is in extreme pain and exhausted is helped to have that pain and exhaustion alleviated, they will feel better.  They will be able to smile perhaps, focus, be more alert, even engage in conversation, with an ease they would not exhibit when overwhelmed with pain and exhaustion.  But when this person happens to be Autistic, people use language suggesting their “autism” has been reduced; words like “recovery” and “cure” creep into the conversation.

Suddenly people become convinced that every Autistic person has food allergies, GI issues and sleep disorders and therefore ALL should do x, y or z.    If that doesn’t work, instead of questioning the underlying issue (that perhaps this person does not have an allergy or insomnia)  many will up the ante by doing more radical “treatments” to treat an allergy or condition that the person actually does NOT have.   Logic falls away.  Common sense is rejected.  The pursuit of a perceived “problem” that may have never existed is discounted as not the problem.   The answer is to pour more money into finding the thing that will remove the “autism” even though autism is not what is causing the pain and discomfort.  Special doctors and “autism specialists” are brought in to advise and treat.

When we start throwing all kinds of things at an “autism” diagnosis, when a massive array of physical and emotional things get added, when temperament, interests, preferences, talents become embedded in the “autism” diagnosis we are causing far more confusion and problems to an already confusing diagnosis.  And people misunderstand and say they’ve “recovered” their child or their child has been “cured” instead of recognizing that what’s really happened is they found something that helped their Autistic child, who had allergies or insomnia feel better.  Meanwhile thousands more, who pursue similar ‘treatments’ with no benefit to their child, conclude they need to find a better doctor, or treatment, or diet instead of acknowledging their child doesn’t have an allergy.

Em listening to an opera rehearsal over the weekend 

*Emma

37 responses to “Muddying the Water: Alleviating Pain ≠ “Recovery”

  1. Very nice post Ariane. I’ve written a post somewhere a while ago about this also. I think it is very irresponsible to blame everything on Autism. A person might have allergies and might or might not be Autistic. A person’s deficits or attributes should not be so freely interchanged with Autism. To use Autism as an excuse or a reason for anything is very wrong. People are who they are. Some with more abilities, some with less but they are still human beings, period. Some people might be Autistic, so what? They are still human beings, they are still contributing to humanity, who are we to judge them differently than everyone else and slap a “Doesn’t count as a human” idea/label on them and call it a day? Thank you for this and all the other posts.

  2. thank you for writing exactly what has been bouncing around my head, once again! I wish I could print this out and give it to everyone who suggests a new “treatment”.

  3. Exactly. When a non-autistic kid has allergies, digestive troubles, and seizures, people don’t go around saying “we need to change him into some other kind of person that he’s fundamentally not.” They deal with the allergies, digestive troubles, and seizures. And the kid recovers from the seizures or the allergies, but not from being the basic kind of person he is.

    • I love that quote of yours, Chavisory – “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” And thank you for discussing it in relation to the NYTimes article about the drug trials. That helped a lot. (Though I really hated the article as it was such an example of why we SHOULD NOT make these leaps and made it sound as though the drug company was callous and wrong to pull it’s funding)

      • Right. It sounded to me like the drug trial never should have gotten funding in the first place…if it was really so ill-conceived as the article made out, it was dead in the water. Whereas, if it really *did* help some subset of the kids, it could be for some real reason that its researchers haven’t even thought to consider, because they were going after the wrong thing.

  4. You just about summed up what I was trying to say in response to yesterday’s post. Biomedical is great to help alleviate some of the discomforts of the co-morbids that go along with Autism. It is not great if you are trying to cure Autism itself.

  5. Oh Yes Preach It Everybody Read This Now!

  6. Well stated Ariane. My daughter’s eosinophilic disorder and the pain it caused was ignored by several doctors because they kept saying that she was simply displaying classic autistic behaviors, as though we should just get used to her screaming and hurting herself. But I knew she was in pain and pushed and pushed for an endoscopy/colonoscopy with biopsies. Finally she was diagnosed, unfortunately she had to be put on a feeding tube because at that point she didn’t want to put anything in her mouth at all, least of all the amino acid medical food, but once all of the allergens that caused the white blood cell reaction were out of her system, it was such an enormous change. Like night and day. I’m on a lot of Eosinophilic lists as well as autism lists and it is so interesting to see parents of non-autistic children describe the exact same symptoms in their verbal children who are instantly taken seriously and diagnosed without parents threatening to sue the hospital in order to get tests run. It makes me wonder how often autistic children are misdiagnosed or not diagnosed at all for these types of things.

    • Jen, I’ve heard similar stories of complaints being ignored or dismissed as “autism” that actually should have been tested for. I’m so sorry. So glad you were able to do something to help her feel better.

  7. These posts are music to my ears lately. Thank you.

  8. Very important points, especially in Marisa’s case.

    Since we only just found out she has atypical Rett Syndrome, but a “clinical” diagnosis, not a “genetic” one, all her doctors, teachers, and therapists have been thrown into a tailspin. Is she still autistic? Well, yeah – the only difference is that we now know WHY she is autistic. She still has all the issues she had when she was “just” autistic. Now she has more because of the Rett’s. Mainly, the scoliosis. So, let’s say we have surgery for her scoliosis (which is imminent) does that mean she’ll be “cured” of her atypical Rett’s OR her autism? Um, no to either.

    Marisa is who she is and there is not one other person on earth like her. Even if they find a cure for Rett’s someday (they have reversed it in mice) it would not apply to her because her MECP2 tests as normal. It’s the area “around” the MECP2 that is not normal. The doctors have never seen this before. Eventually, if they find this in other girls, they will name this branch of Rett’s after her.

    What all this means for us is that we will continue to pursue her various therapies, they might need to be tweaked a bit considering what we now know. But I have no illusions that she’ll ever be “cured”. The best I can hope for is happy.

    • Oh Ang, good luck with the surgery. Please keep me posted if you feel like it. I will definitely be thinking of all of you.
      I have to admit, I find the distinction between Retts and Autism really confusing. I believe according to the current DSM, Rett’s has been removed from the Autism spectrum classification completely. Yet a child can be diagnosed with both, right? Or do I have this wrong?
      “Marisa is who she is and there is not one other person on earth like her.” Just like her mama, Ang, just like her awesome mama!
      XX

      • They’re changing the DSM so I’m not sure. Rett’s used to be included under the autism “umbrella” as a severe, girls only form of autism. And yes, a girl can be dx’d with both. I think they consider the Rett’s the primary diagnosis, the autism as secondary.

        Risa’s surgery won’t be until August at the earliest. Joel had his yesterday and is still in the hospital as we speak. He had some trouble with the anastesia, vomiting and dizziness and whatnot. The doctor was actually going to send him home last nite, I was furious! I should be getting the call to go get him any minute.

        It’s going to be a long, long summer…..;)

  9. So well articulated! I wish all the world could read your post and understand this. Many lives could be saved. My heart aches for all those whose parents have been led away from the joy of loving their children for who they are, by those Pied Pipers of Cureville.

    • For me it began with abject fear of the word “autism” and all that I thought that meant and implied. From there, it wasn’t a big leap to start finding ways to “fix” it. Those who speak the loudest, often cloak their words in “science” and on it goes…

      • Believe me, Ariane, I was there too! I was willing to turn over whatever rock I thought I needed to. But I very quickly realized that whatever I did, it had to be for my son’s well being, not my own. We did GF/CF for about a 36 hours and gave it up! It just wasn’t there. He had some minor gut issues that were easily solved with pro-biotics. We gave him enzymes… nothing…. No matter how I might try, I couldn’t turn any of it into more than what it was. We did subject him to ABA, but I’d like to think it was for the right reasons, with the VERY right people, and I do believe it was beneficial FOR HIM. We gave a great deal of thought to who he was before we went that route, and I have no regrets to this day (he turned 15 last month). I don’t think it is right for everyone, and I also feel that it MUST be combined with a ‘verbal behavior’ component. If you do not address communication as the main component, it’s just torture in my book. It’s all about giving an individual their voice. … and… now I’m rambling… so enough of my soapbox for now! (and just in case someone misinterprets my use of the words verbal & voice, I do not specifically refer to speaking out loud with words. Verbal Behavior refers to a form of therapy focusing on behavior as communication, and someone can find their “voice” through many means.)

  10. You make the point that so many seem to miss, over and over again! I’ve had many clients share that they were trying a gf diet, or a milk-free diet, or…or…or…because a friend had tried it, and lo and behold, their child’s behavior improved. But no-one seems to realize what you’ve so eloquently pointed out: if you address the underlying discomfort of a true medical issue, or allergy, or whatever is physically going on, of course the child will feel better, and in turn “act” differently!

    I think a great part of it is that many cannot accept that Autism doesn’t have a magic “fix.” There’s no one-thing to make it “all-better” and in fact, looking at Autism as something to be “cured” is doing a terrible disservice to the child.. I think, as you said, many feel if they can just throw enough money, enough specialists, and enough hours and special things into it, their child will magically be better. It’s sad, but it’s also extremely frustrating. So many professionals promote this way of thinking to parent’s that are, in many cases, at their wit’s end. The parents latch on, thinking it’s finally a fix…and it’s not.

    • Gluten gets a bad rap; you can’t make a good cake without it!

      • Nostromo – okay, quick story… When Em turned three (about three months after we’d gotten her diagnosis) we gave her a birthday party. I’d bought into the whole ~ Autism = gluten/casein intolerance ~ so everything I made for her birthday party was GFCF, including her birthday cake. (No flour, no dairy, no sugar) I used a variety of so called flour alternatives, almond flour, rice flour and sweetened it with honey, maple syrup and agave. I worked for a couple of days, baking and cooking. Em didn’t touch or even taste anything I’d made. Later my son, who had very sweetly claimed to like the cake, even went so far as to eat a small slice of it, admitted it was “okay” but that he much preferred the “regular cake”, except for my husband, who to this day insists it was one of the best birthday cakes he’s had! (He’s such a good guy.)

        • LOL (I did!), good story! Never tried Gluten/Casein free with our son, and as of yet can’t see why we ever would.
          ..Gluten free pasta, bleercch 😛

    • Melanie – “many cannot accept that Autism doesn’t have a magic “fix.” There’s no one-thing to make it “all-better” and in fact, looking at Autism as something to be “cured” is doing a terrible disservice to the child…”

      This is exactly how I once felt. I could not accept that there wasn’t a magic “fix”, particularly as others were reporting that there was. So I clung to that idea and let it infiltrate all common sense, all logic.

      The whole idea of a “cure” is horrible to the child, to their self esteem, to their self-confidence, to their idea of who they are in this world and in our society.

      I couldn’t agree more!

  11. I’ve been saying this for a long long time. you just said it better than I did.

  12. I love this post.

    While some issues seem more common in autistic children I feel like every child is different. Not just autistic children.

    My step son A as distinct food likes and dislikes. But so do my non-asd nieces and nephews.

    We do treat his insomnia occasionally with melatonin. As well as my own. It doesn’t cure his autism but a rested A is a happier A for sure. I’m not sure that there will ever be a “cure” but I’m happy for anything that makes daily life better for him.

  13. It would suck if everybody thought everything that was wrong with me had something to do with Cerebral Palsy luckily I have a good doctor who diagnoses bronchitis as just that and not as something that’s CP related.

  14. Even though it caused me a lot of trouble, I am so very, very glad I didn’t have a diagnosis as a young kid – if I’d had a diagnosis, my asthma probably would’ve been even less controlled because they would’ve chalked up my reaction to asthma symptoms as autism and my pickiness and digestive problems to autism when I actually I have neuropathy in my digestive nerves (so my peristalsis doesn’t work right, and basically symptom-wise it’s IBS on steroids if I vary my diet too much).

    Yeah, I’m probably autistic, too, but my refusal to vary my diet has less to do with my love of routines and more to do with the fact that I’ll in serious pain if I don’t exercise great caution with how much I vary what I eat. Like, so much pain sweat’s rolling of you and you soak through your clothes as all you can do is tremble and whimper pain. Unless the food is so amazing as to be worth that level of pain, I’m probably gonna stay samey. Likewise, excessive yawning and rubbing my chest a lot have always been asthma early warning symptoms for me, not stims.

  15. I’m not sure if I misunderstood your post, so apologies in advance if my interpretation isn’t right. Although I find it equally frustrating that everything gets lumped into just being Autism, I believe the research is leaning towards there being more sub-groups of Autism. With autistic individuals with GI and co-morbid significant sensory issues potentially demonstrating an auto-immune type possible pathology or subgroup. Ever behavior has a root cause, and also I appreciate learning behavior strategies to help certain negative behaviors, these strategies are useless to me if we aren’t addressing the root cause behind them and can potentially be counter productive, perhaps even emotionally damaging to my daughter if she feels misunderstood or made to feel ashamed over them. I prefer to research instead the root cause and provide to the best of my ability the appropriate be it medical or other therapies to help minimize the issue first, then with careful consideration and validation of her feelings, we then work on developing behavior strategies and coping skills with her to help her feel more in control and empowered during a difficult situation for her. I have found this approach personally,with my daughter to be most successful. More importantly it has created a level of trust between she and I that has helped her achieve things she didn’t think she could do and significantly lessened her anxiety. When Mom ‘gets it’ and can provide the tools to help her independently better manage her challenges, it builds her self-esteem and creates an environment where she can grow but knows she will be supported in the right way, if she needs it. Autism, really Autisms, is complicated to state the obvious. There are so many things that occur leading up to the generalized spectrum of symptoms. The path to get there is as unique to the person as Autism is to the person. To believe a diet or drug can cure I believe is naive and in some ways offensive at best. However, to ignore the physical aspects of Autism I believe is irresponsible and damaging. It would be oversimplifying things to say my daughter’s GI and immune issues are the cause of her Autism and therefor to “cure” them would result in a cure for her Autism. Gene suspeptability, expression and expression timing coinciding with developmental milestones etc..etc…and a cascade like effect seem a more plausible theory. I believe it is my personal responsibility to help minimize or in some cases normalize those physical ailments I can SAFELY have an effect on, through diet, immune support/therapies while also supporting her cognitive growth and emotional state as well and providing her with kind intelligent strategies to cope when needed.

  16. We have our son on a GFCF diet. Why? Because it helps his digestive system, which in turn helps his focus and attention. But we’re not convinced this is an aspect of his autism…many people have issues with gluten, myself included, and I don’t have autism. I also have insomnia, and so does our son.

    As our GI doctor said, some GI issues in people with autism may be related to sensory processing issues; e.g., our son seems to “hold it in” longer than he should, perhaps as some sort of reaction to the sensations he’s feeling in his gut. Does this mean he has a so-called “leaky gut,” or rather that his neurology is affecting the way his body processes sensations in his GI tract? The former has never been proven, but anyone who’s had stomach pain can attest to how that will affect your focus and disposition.

    I notice this with many parents we know: every time their child has something going on, they immediately go to ‘dietary causes’ or some new possible allergy that is autism-related. The DAN doctors are more than happy to help, since it means sales of more supplements and treatments — almost none of which are covered by insurance. Maybe it’s dietary, and maybe it’s social. Did my son wander off at the birthday party because he had cake a little earlier, or did he do it because the event was overstimulating? My guess is generally the latter.

  17. I do question one thing: if allergies,bacteria,yeast overgrowth, vitamin deficiency causes an inability to focus enough to learn language, proper play, or basically their brains are so inflamed they turn inward into their own world…aren’t all of those symptoms are part of the criteria for diagnosis?…then are they really ever autistic? I do believe there is a small percentage of kids on the spectrum that belong there and they are quirky and lovely just as they are, what worries me is the children who are suffering from a toxic environment and may have C.Diff or a nasty parasite sucking up all their foods and vitamins and causing those allergies parent’s read posts like this and justify not doing a thing!

    • Ruby – Not sure how you came to such a conclusion from this post. Never, not once do I say people should ignore or not treat their children’s various ailments. What I object to is when people talk about autism as though it included all these other things, when it most certainly does not.

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