When we ask “Are we “over-diagnosing” autism?” there is another question implied that is rarely voiced. If we are not "over-diagnosing" then what is causing the significant rise in people being diagnosed? Are we doing something that is causing rates of neurodivergence to increase?
As a Clinical Psychologist and mum to two autistic kids I am asked these questions frequently with varying levels of sensitivity. People often ask indirectly when they wonder (out loud) whether “it” runs in families or if siblings learn “it” from each other. The worst way this question has ever been posed to me was by a teaching assistant who asked me if I was hoping for “better luck this time” as I introduced her to my newborn, third child.
I did not answer.
Autism awareness day was this week and April is autism acceptance month so I decided this week might be a good opportunity to reflect on how I would ideally answer that question if I was not paralysed by rage. I thought I would share my thinking here because if you are a mental health professional you probably get asked this question quite frequently too and if you are a parent to a child with one of those labels you might well find it difficult to answer in a way that really reflects your views because engaging with research in this area kind of hurts. I know I do.
In fact, writing this post has led me to some anxious places as I’ve had to visit websites that don’t share my values and read research where no care has been taken to foreground the autistic experience or needs of autistic people. But I decided to wade on through the difficult feelings this week in the hope that this summary might be useful to you, if only to make those insensitive people go away feeling as ignorant as they are.
TLDR: Are we over-diagnosing autism?
So, if you know this topic is going to be painful for you and you want the TLDR version here it is:
In a nutshell, even the leading psychologists at the forefront of neurodevelopmental research can’t say for sure whether we are under or over-diagnosing (sorry Wes). There is a complex picture including better awareness, better diagnostic tools that are more sensitive to the way women and girls show their difficulties, broader diagnostic categories changes in society that mean people are more likely to seek help, a more pressurised education system plus an increase in access to private diagnoses. There are also some indications that our environmental and dietary context may, possibly, be playing a role in increasing vulnerability. I have not yet found a conclusive study that successfully untangles all of that.
If you are interested in why we have seen an 787% increase in diagnosis in the past twenty years, I invite you to jump down that rabbit hole with me but please look after yourself as you do. If you (like me) have personal skin in this game it is crucial to remember you didn’t cause your own or your children’s struggles. The answer to “what causes autism” will always be complex and there will always be many factors beyond our personal control. The term autism itself is contested, imperfect and may one day change. We are doing the best we can for ourselves and our loved ones with the knowledge we have.
Why “might” we be seeing big increases in diagnoses of Autism?
Here are a few of the avenues of research I have come across:
Most experts in diagnosis that I am fortunate enough to know believe the bulk of the increase is due to our greater understanding of how neurodivergence presents in women and girls and in marginalised communities. Basically, we have got better at recognising when people who do not fit the stereotype of autism would benefit from the diagnosis. The diagnosis itself has also been broadened to include people who would have previously been given other labels such as Aspergers so it makes sense that more people would be given an autism diagnosis.
My personal experience also tells me that, at least here in the UK, we have built a world in which people increasingly seek diagnosis for protection. Through our relationship with the internet, devices and a grasping, striving culture we find ourselves continuously observed, assessed and frequently found wanting. Anyone who misses a few rungs of the ladder, or needs to step off entirely will only be allowed to do so if they have the permission slip a diagnosis gives.
Diagnosis is always a difficult experience. If you can’t self-fund, then it involves years of waiting and you will only be offered an assessment by the NHS if your struggle is deemed significant. Even if you can afford private assessments, the process is long and emotionally draining, involving long interviews, observations and collecting information about the most challenging moments of your life. In my opinion, it is only something you would go through if you or your child were in desperate need. Unfortunately, we have created a world where a need cannot be met until a professional says it must be and that might also mean that some people that would not have sought diagnosis for themselves or their child in the past now need one.
There is some research suggesting that we may also have a real increase in the numbers of autistic people, although this really isn’t clear as it is very hard to tell given the changes in diagnosis we’ve mentioned already. If there is a real increase, some environmental factors, including toxins, chemicals found in Ultra-Processed Foods and maternal nutrition, may have a role to play (although probably not causal on their own). Healthline gives a nice summary of the areas that are being investigated. It is all pretty tentative at this point and it seems that it is likely that if these things impact they do so as part of complex relationships between genetic predisposition and the environment.
This week (On Simona Stokes’ recommendation) I listened to an episode of the Huberman Lab podcast where a theory about mitochondrial dysfunction was suggested as contributing to increased levels of autism. In lay person’s terms (the only ones I have available to me), mitochondrial dysfunction, which affects the energy production of cells, has been implicated in autism. Some studies show that some children with ASD exhibit biomarkers of mitochondrial abnormalities. These issues may contribute to systemic symptoms like neurodevelopmental regression, immune dysfunction, and gastrointestinal problems. Go here to read a 2024 review by Dr Frye.
Potentially, this could be one of the mechanisms that explains the links that seem to be emerging between autism, poor maternal nutrition and other environmental factors such as toxins.
The impact on parents
I am sure there are a million more emerging theories but that is all I’m going to say about diagnosis rates today because, fascinating and painful though it is, I am a clinician. My job is to get on with the task of helping people who need it, and, whatever the cause, it is true that we have many more children struggling to cope with the demands of our education system and, consequently, more parents struggling to balance the needs of their children with their own needs and working lives.
I want to use today to raise awareness of the challenges working parents face when their children, often as a result of neurodivergence such as autism or ADHD, can’t cope with the “normal” child care settings such as nursery or school.
I did a lunch and learn on this topic last month for Bloomsbury’s lovely parent and carers network and these were the points that resonated the most with participants and that research has shown to have the biggest impact on mental health:
Financial pressure, did you know a family with a child with Special Educational Needs or Disabilities (SEND) spends over £500 more on average per month just to have the same quality of life as a family with no SEND?
Exhaustion from fighting for your child’s basic needs (SO many forms and SO many meetings)
Practical problems leading to conflict between work and home - lack of suitable childcare being the biggest source of stress
Trauma and grief with no time to process any of it
Strain on relationships (because of all of the above)
This isn’t even all of it.
Given 18.4% of children in the UK now have identified Special Educational Needs or Disabilities (there will be many more that don’t have a label but do struggle) we need to begin proactively supporting working parents with this struggle. And we are failing to do that.
A couple of years ago I was forced to stop practicing as a therapist because I couldn’t get any childcare for my “not fine in school” children. I couldn’t do one of the activities that has brought me meaning and a sense of identity for more than 15 years and I felt broken by it. I tried to refer myself for counselling but was told I did not fit criteria for any service offered by the NHS.
I hate to think of how many parents have hit this blockade and sunk further into the depression, anxiety and trauma that so often accompanies the struggle of parenting a child with SEND. Given that one study found that mothers of autistic children showed cortisol (stress hormone) levels and patterns similar to those of combat veterans (Seltzer et al, 2011) it seems ridiculous that support is not offered as a default.
I’m heartened by the fact that more companies are now wanting to invest in training in how to support us but progress is slow. We need the NHS, insurance companies and Employee Assistance Programmes to step up to the plate too.
So for autism awareness day this is the bit I want to raise awareness for. Anytime the cause or prevalence of autism is debated please can we remember that behind every child that is diagnosed is someone who loves them and they are probably struggling too.
Ways to work with me
If you are a parent struggling with your mental health, HG or recovering from a traumatic birth my practice offers specialist therapy to help you thrive again. Book a free chat with us over at www.knowyourmindconsulting.com
If you are a mental health professional venturing into private practice, possibly because you NEED the flexibility we have everything you need from legal documentation, courses and coaching to create a fulfilling and profitable practice (whatever life throws at you) over at www.psychologybusinessschool.com
If you are a parent struggling to find your spark for your career or business due to the changing needs of your family, maybe due to SEND or caring responsibilities. You can book a free call here to discuss coaching to reignite your spark and help you reconnect with your professional values.
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