PSA: Stop Conflating Co-Occurring Conditions With Autism

Autism is known for having a ton of co-occurring conditions that can go along with it, many of which are significantly more common in autistic people. For example, 80% of autistic people have an anxiety disorder. 30% of autistic people have some sort of seizure disorder. I don’t have specific data on these next points, but ADD/ADHD and OCD seem to be significantly more common in autistic people. 99+% of autistic people meet the requirements for Sensory Processing Disorder, though this usually isn’t given as a separate diagnosis because the criteria for ASD tends to cover this without need for an additional diagnosis. Synesthesia is roughly 80% more common in autistic people. (though this one isn’t necessarily bad!). Dyspraxia, dyslexia, dyscalculia, and alexithemia are also much more common in autistic people.

As for me, I have an anxiety disorder, some fine-motor skill dyspraxia, and I probably meet the criteria for ADHD even though I’ve never been officially diagnosed with it. I’m also a synesthete (meaning I process some senses as other senses, for example, I can literally feel some sounds).

The important thing to remember with all of these things, however, is that all of these conditions are not autism in themselves. These are co-occurring conditions, and as such should not be lumped together as part of autism. I say this, because doing this is incredibly common, not just for the conditions I’ve listed above, but for other things as well. The following is a list of symptoms that are not autism. However, so often I see people lumping these together as part of autism:

  • Seizures
  • Migraines
  • Digestive Issues
  • Joint Pain
  • Dizziness
  • Allergies

If your autistic child has any of these symptoms, please take them to a real doctor. These, and many other, conditions are not autism. Do not list them as autism symptoms. Do not assume that one of these issues “must just be autism.” They are not, and these could indicate a serious health problem. They require a separate diagnosis, separate consultations, and separate treatment, if necessary.

This is important, as if you make the assumption that these things “must just be autism” and not go to a qualified health professional, you could be seriously putting your child at risk. This happens so incredibly often, and it can be incredibly dangerous. Autism Speaks, an organization that is loathed by the autistic community for dozens of reasons, lists (or at least used to list) both seizures and GI issues as autism “symptoms.” So often you’ll see parents of autistic children talking about conditions like the ones I have listed above as if they’re part of that child’s autism. Some, in an attempt to seek pity or attention, use these as examples of how their child is “more autistic than thou.” In any case, they’re conflating conditions that are not autism, but may co-occur in their autistic child, with autism. This of course not only spreads general disinformation, but can also have serious consequences for many people.

You see, about two weeks ago I posted a shortened version of essentially this same thing on the Facebook group “Autism Inclusivity,” which is a group where parents of autistic children can ask autistic people for help and advice for things concerning autism. It’s a pretty cool place actually. Anyway, when I made this post I was taken aback by how many people responded with stories of how doctors themselves had written off the medical issues of either themselves or their children because they were autistic!

Parents told stories of how they took their autistic child to their pediatrician for a GI issue or allergen issue only to have their doctor tell them something to the degree of “yes, these things are common in autistic people/common signs of autism,” and then give them a referral for ABA therapy. Or how they’ve had to travel from specialist to specialist in order to find a doctor who’d treat their child’s medical problem as something separate from autism. Another mother commented about how they’ve often had to switch doctors because they dismissed signs of pain and discomfort in her son to simply being non-verbal autistic rather than actually being in pain from a medical issues. Finally, there was a response from an autistic person telling about how often her legitimate mental health issues are written off as just being part of her autism.

Free picture (Work of doctor) from https://torange.biz/work-doctor-19703I mean, these people are doctors, shouldn’t they know better? Apparently not, and I believe it’s the lumping together of autism and co-occurring conditions that’s causing these problems. A select small few of the things I’ve mentioned above actually are more common in autistic people (we’re something like eight times more likely to have a seizure disorder). A few others aren’t even more common in autistic people or related to autism in any way, so I’m not sure why people make them out to be autism symptoms. Maybe it’s because people have a tendency to make every problem their child has part of their autism diagnosis. I’m not sure. Either way, it is doing and has done serious damage to the ability of autistic people to seek health care. Disinformation is far more dangerous than ignorance, especially in a case like this.

So, I ask you all that you speak out against people who make co-occurring conditions out to be part of autism. They are not part of autism, and conflating them with autism has serious negative consequences. If you have conflated autism and other conditions in the past, I ask that you please stop doing so. You may certainly acknowledge that your child has other medical problems, but absolutely under no circumstances should you lump them together with autism. This sort of thinking  can be incredibly dangerous under the right circumstances, so it’s far past time that we stop.

22 thoughts on “PSA: Stop Conflating Co-Occurring Conditions With Autism

  1. I get pretty tired of the way that people who haven’t even bothered to get informed about the actual autism criteria drag up all kinds of physical and mental problems and worry (or hope) that they’re possible signs of being on the spectrum But much worse is doctors refusing to treat co-occurring conditions.Good post.

    Wondering, though, where your statistics come from. I can’t seem to find any that are reliable. And we need to remember that they might be very different if all the non-diagnosed aspies and autistics could be included. I wouldn’t be at all surprised that a very large percentage have sensory processing problems (I’m an “invisible” aspie and I have quite a large assortment of them.) But I’d question the stat on synesthesia, since it’s thought to be fairly rare.

    Liked by 1 person

    1. Here’s the actual citation for the Synesthesia statistic if you want to Google scholar it:
      Baron-Cohen S, Johnson D, Asher J, Wheelwright S, Fisher SE, Gregerson PK, Allison C, “Is synaesthesia more common in autism?”, Molecular Autism, 20 November 2013

      Synesthesia is present in 4.4% of people according to another statistic, about 1/25, so it’s actually about twice as common as autism, haha.

      The other statistics are from various sources I remember but haven’t bothered reading. Take em or leave em, this blog isn’t an academic journal. However, if you have newer/improves stats from someone, PLEASE send them to me so I can update this, as I definitely don’t want to be posting stuff that’s outright false!

      Liked by 1 person

      1. I was just curious. I know how hard it is to find reliable info on the web, and a large part of that is sorting out the authoritative material from the just plain BS. Thanks for the synesthesia citation. I admit I have somewhat of a bias against Baron-Cohen, but I’ll try to not let it get in the way.

        Liked by 1 person

      2. Actually, thanks for making me find the citation, because it made me find a typo… it was 20% not 80%. 80% more common in autistics, not actual prevalence…. I’ll edit that.

        Like

      3. Ah. That seems more realistic. Glad to be of service, even if accidentally. I won’t have a chance to track it down until tomorrow.

        Like

  2. Hi! I’m a mental health counselor who works with Autistic adults. Sadly, what you’ve written here is spot on.

    I thought you’d like to know that there’s a medical term for what you’re describing: Diagnostic overshadowing. It describes any time you let one diagnosis explain behaviors or symptoms that aren’t consistent with the diagnostic profile, or that would typically warrant assessment for other organic causes.

    I actually did my graduate thesis on pain, and read so many case studies outlining how people with Autism and other developmental differences either were not given appropriate palliative care or other necessary medical services due to Diagnostic overshadowing. Sadly, sometimes the patients died as a result.

    Thank you to raising your voice against this common practice, its a bias that anyone who is or who loves someone who is Autistic should be aware of.

    Liked by 3 people

  3. Sensory Processing Disorder (SPD) should be its own separate diagnosis though. While most Autistic people seem to have SPD, most people with SPD are not Autistic. SPD is a much broader demographic than Autism, especially as SPD is becoming better understood. It would be beneficial for SPD to be talked about separately, even by Autistic people. I cringe when someone says that their Autism causes them to be sensitive to food textures for example, it would be more accurate to say SPD. Also, the mistaken notion that everyone is a little bit Autistic, I think comes at least partly from people talking about co-disorders as if they are Autism, so people with OCD, ADHD, SPD identify some of these co-disorder traits as little bit Autistic.

    My Autism could be considered very mild and sometimes even beneficial, but I have SPD quite seriously including not driving a car due mainly to SPD. I consider SPD to be a little bit of a disorder for myself (more annoying than disability, but I am OK with the disorder label for SPD), but I do not consider Autism to be a disorder, instead Autism is different way of thinking and processing from the norm (neurotypical). Separating out the “co-disorders” from Autism would help people understand that Autism is not a disorder itself.

    Liked by 3 people

    1. I just attended a presentation on the Stanford Neurodiversity Project at an AASCEND meeting in San Francisco. The M.D./PhD who presented specifically spoke about the need of changing the “disorder” language to Autism Spectrum Condition. They are encouraging/studying/promoting admissions of autistic students and hiring of autistic people at Stanford. The program is only in its 2nd year, but it gaining some momentum as they partner with corporations who are focusing on neurodiverse hiring, like SAP, Microsoft, Ernst & Young, Lawrence Livermore National Laboratory.

      Liked by 1 person

      1. I ran a special school in Scotland and we had been using ‘ASC’ for quite a while. I quite agree. I perceive autism and a cognitive style. Some people with autism are also disabled (intellectually impaired), but many are not.

        Liked by 1 person

      2. You can be disabled and not intellectually impaired, you know. I’m not intellectually disabled, my IQ is well above average, yet my autism is 1000% a disability.

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      3. I worked on the Scottish autism strategy for 7 years and during that time I/we found it difficult to agree a terminology that was acceptable to everyone. ‘People with autism’, ‘autists’, ‘autistic people’ etc etc. There were big disagreements amongst representatives of the autism community, so we just had to accept that there is huge diversity and thus a similar range of needs. The parents of severely disabled children/young people found it difficult to accept that those classsed as ‘high functioning’ could also be ‘very impaired’ and required services in the same way that they did. Whenever you make a general statement about autism, someone will disagree with it. It is important therefore to respect multiple, sometimes conflicting, views.

        Liked by 1 person

  4. Bravo. I absolutely love this article 👏🏻👏🏻
    Every time I take my 4yo non-verbal autistic son to the doctors or hospital appointments that have no connection to his diagnosis……. magically nearly every illness is due to being autistic!!!! One practicioner “advised” that eczema, Asthma and need for glasses were a result of his ASD! She could basically guarantee that.
    This BS wasn’t long after my bubba was diagnosed Age 2, emotions high and little knowledge of ASD I had no comeback 😒 2 years later, and they still try and blame his diagnosis on everything, but this mumma is no longer taking their BS!!! 😂😂😂

    Oh Dr my sons head just fell off!!???!! Oh this happens quite regularly to autistic children🙄😂😝

    Amazing article. Thank you.

    Liked by 2 people

  5. Brilliantly said! I was misdiagnosed as autistic when I was 2 because I screamed a lot and refused to eat (or play according to my mother’s standards). I was put into a residential ABA program that was done in the Lovaas style (think restraints and shocks) and was magically “cured” after 3 months! (This was in 1978 at my mother’s insistence.) However, I still kept feeling sick and in pain. It wasn’t until I almost died in my early 20s that the real issues started coming out: my behaviour was due to my headaches (fixed by glasses), stomach issues, and chronic pain/fatigue. (How is a 2 year old in crisis supposed to explain that to anyone??) I’m now 43 and have finally gotten the answer: I have mitochondrial disease, a genetic condition passed down through my mother’s side. While autism can be a part of it, my problem was purely due to physical issues. None of the physical issues were addressed until the last few years.

    An autism diagnosis can be a great thing for someone like my husband who is on the spectrum but didn’t get diagnosed until he was 56. (Had he been diagnosed earlier, his life might not have been the hell it was with trying to keep jobs, relationships, etc.) However, if the person is not autistic, it could be deadly or at the very least traumatizing, like it was for me.

    Liked by 1 person

  6. Absolutely spot on, couldn’t agree with blog more… although autism awareness seems to be rising in many countries, there is a stupendous overload of misunderstanding as to what defines autism and what other conditions might be “something else” randomly occurring in the autistic person’s body. Thank you for speaking out on this extremely distressing issue.

    Liked by 1 person

  7. I have been thinking about just this subject a lot, and I think you don’t go far enough. I think many people conflate certain co-morbid conditions with autism to the point that they think you can’t be autistic without them. For example, almost everyone seems to still think that receptive language disorder must be present for someone to be autistic. There are other communication conditions that can affect interpersonal relationships- receptive language is but one type, and it’s very particular symptoms (flat affect, unusual vocal tone, inability to understand jokes or sarcasm, etc.) are not experienced by every autistic person and yet are seen as inherently autistic by allistics (and even some autistics). I also find that a comorbid ADHD diagnosis complicates things still farther because the methodical habits equated with autism can be almost totally obscured.

    Liked by 1 person

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