We are getting it wrong and ignorance is hurting

A few weeks ago, I read some posts on an autism support group that upset me profoundly. Questions were being asked about how to stop a child with autism from withholding bowel movements. Comments were made about small children with ASD passing huge bm’s only once a week.

Much of the thread seemed almost jovial, or at least light-hearted, with some people posting laughter emojis and others expressing how happy they were to learn that their child wasn’t the only one doing this. A few people suggested these kinds of behaviours and bowel movements were within the range of normal and often seen in kids without ASD as well, not really a big deal. Some suggested that withholding was behavioural and required behavioural answers.

No one talked about how common GI dysfunction is in ASD.

Not one person seemed to understand that if you have a GI tract that is functioning normally you cannot and will not even try to withhold. Not one person questioned how absolutely not funny it is to know that a child is suffering a medical condition that is obviously and at the very least causing pain and reducing quality of life.

How could this be?

I believe these are good parents. But I also believe that they have been convinced that ASD is simply a difference, just an unusual way to see the world, an identity even, and this framework to understand ASD has literally blinded them to medical issues, let alone the premise that ASD can be understood as a whole body disorder.

But good information is available…and knowledge is power (and power can heal)

We’ve argued on this blog before that to genuinely support people with ASD, we must embrace BOTH the social and medical models of disability. Given the research available, it genuinely shocks me that we even have to make this argument but I see evidence everywhere that it needs to be done. This is one of the reasons our charity has updated Medical Comorbidities in Autism Spectrum Disorders: A Primer for Health Care Professionals and Policy Makers.

Creating this document takes hundreds of hours of work. Why do we devote so much time to one project?

Simple: unless medical professionals understand the possible mechanisms, symptoms, behaviours and other possible consequences of comorbid and underlying medical conditions in autism, thousands and thousands of people suffer unnecessarily.

And unless parents and carers demand that health care professionals and government bodies become more informed about autism and comorbidities, including appropriate investigations and treatments, these changes are not going to happen very soon.

In fact, these changes, the progress I think we can reasonably expect, is absolutely not happening, let alone soon enough.

Sixteen years ago, when my son regressed, I remember reading over and over again that children like him have ‘normal life spans’. That is patently untrue – an unresearched lie being told for reasons I really cannot grasp. The ‘normal life span’ lie has now been addressed by proper research, the same kind of research that shows this diminished average lifespan in autism is partly because children like my son suffer from many medical comorbidities – which are not being  properly investigated or treated.

In the more than 16 years since my son regressed, hundreds and hundreds of research papers have been published about medical comorbidities in ASD and yet the autism and health care communities are incredibly ignorant in this regard.

Sixteen years ago the very first paediatrician I approached to help my son was open-minded and did his very best to help, listening carefully to the symptoms I explained and taking my concerns seriously.

But a year ago, at what is supposed to be a world-class paediatric hospital I felt like exactly one person there believed that my son’s medical issues needed investigation – and that one person was me. 

I perceive a wilfully maintained ignorance when it comes to the medical model of understanding autism. How else can we explain the vast number of research studies to be found in Medical Comorbidities document — and that is a curated list, with much left out — and the vast number of uninformed and underinformed parents and professionals who have a duty to ameliorate poor health in all children? 

EACH of us can help make things better (it’s the only thing that can)

Please share this document with any ASD families you know.

Please share it on ASD message boards and Facebook groups.

Share it with support workers and teachers.

Share it with your family and friends.

Share it with your health care providers and use it to help you communicate clearly with them, so that they will hear and act on your concerns, the symptoms you’re seeing and the investigations you believe your loved one needs.

No, this document is not an easy read. We’ve made it as accessible as we can, but it’s dense. It uses medical terminology. It cuts at your heart to realize your child – that very literally tens of thousands of children and adults — may suffer some of these medical conditions that have to this point gone untreated.

But, we all must be informed. We all must do what we can to ensure that our own ignorance and the ignorance of others isn’t part of the reason that some of society’s most vulnerable cannot get the health care and support they deserve.

Further reading on recognising medical issues in autism

Autism should be approached as a chronic health condition, scientists recommend

Addressing Poor Health & High Death Rates in Autism

Bridging the Gap Between Physical Health and Autism Spectrum Disorder

Latest Autism News & Research