ADHD and Autism Care For Women Must Be Addressed

IMPORTANT: To trans women – there’s not much definitive research on how you have been failed in ADHD/Autism care yet. There needs to be far more inclusion in gender differences studies and it’s not my intention to make you feel excluded if it comes across that way – I am reporting on academic science I can find. Due to the effects of transmisogyny – these same issues will apply to you, but there will be unique considerations also.

Trans rights are human rights.

If you can’t accept that – no other science I show you will matter because you can’t pick and choose the replicable science you want to “believe”.


I’ll start this off with a story. Someone who has become a great help and friend to me recently had tried to get help for their wife with suspected Adult Deficit Hyperactivity Disorder (ADHD). When they went for assessment they were diagnosed with “borderline ADHD”. As in close to being ADHD but not enough. There is no such thing as borderline ADHD. (This also wasn’t a diagnosis of comorbid Borderline Personality Disorder and ADHD). The treatment instead that was given to treat this “edge case” of ADHD – was anti-anxiety medication and to persist with their anti-depressant medication.

After looking closer and at the more recent work with cis women and cis girls who have ADHD it suggests that this is an prime example of medical bias – and it’s the result of bad science, and outdated views – women are held to different standards for ADHD diagnosis. This seems like a misdiagnosis.

It’s really bad for ADHD and Autistic cis women

If you’ve already know this, I don’t mean to rehash what you already know, it’s simply to help anyone of any gender who doesn’t know this already.

To cis women, I am so sorry. I am sorry that the entire medical profession has been gaslighting you for years. I am sorry that psychological researchers have failed you for so long. I am sorry that you have been denied validation of your conditions. If you haven’t read the science and don’t already know I can give you evidence on how you have been failed and why but some of this will be tough reading – it was for me.

There’s a specific kind of hell with living with ADHD or Autism or both undiagnosed. We constantly believe that we’re not as good as anyone else. We constantly assume that we are “crazy” or “hysterical”. We’re constantly becoming someone who we don’t want to be. So we start masking your symptoms with “hacks” or things we’ve found that seem to work for us, we limit behaviour that is natural to conform to an idealistic “normal” standard. We suppress completely natural feelings and behaviours for your mind.

The effects of socialisation and specifically the patriarchal desire for women to be more subservient leads cis women to mask faster, they are more prone to this behaviour than men. Society’s gender bias in how men and women should behave is vastly different. Women do far more unpaid labour. The effects of being an undiagnosed cis woman will mean that you are having to put in more effort constantly than your undiagnosed cis male peers. This must change as a priority.

Usually I have focused my articles on either ADHD or Autism. There’s a lot of overlap – where specific behaviours exist or reasons for not getting diagnosed I will make a distinction.


A brief (but incomplete) chronological history of ADHD and Autism

I have to start this section with a little historical context – this is not to absolve the issues of misdiagnosis but to explain the historical contexts which have allowed them to occur. I’ll post a timeline here and then discuss it a bit further below. Some of the language here is really problematic but I am quoting it as is.

Timeline of ADHD and Autismin Science:

  • 1902 – (ADHD) British Pediatrician Sir George Still provides an early description of what would become ADHD as “an abnormal defect of moral control in children”
  • 1908 – (Autism) Swiss psychiatrist Eugen Bleuler first uses the term ‘autism’ to describe schizophrenic patients are “profoundly withdrawn and self-interested”
  • 1936 – (ADHD) Dr Charles Bradley discovered a medicine called benzedrine is effective in helping children with performance or behaviour problems in school. His research contemporaries ignore his findings.
  • 1943 – (Autism) American child psychiatrist Dr Leo Kanner describes 11 children who were highly intelligent but “displayed a powerful desire for aloneness” as well as “an obsessive need for sameness”. This was later referred to as “early infantile autism”.
  • 1944 – (Autism) German Nazi Scientist and Eugenicist Hans Asperger describes a ‘milder’ version of autism known as ‘Asperger’s Syndrome’. In his studies all subjects were boys who were highly intelligent, with obsessive specific interests, and had trouble socialising.
  • 1952 – (ADHD/Autism) The first ever Diagnostic and Statistical Manual of Mental Disorders (DSM) is published. Children with autism symptoms are labelled as having childhood schizophrenia.
  • 1968 – (ADHD) A new condition called ‘Hyperkinetic Impulse Disorder’ is added to the second publication of the of the DSM (DSM-II). Hyperactivity was thought of as an indication of brain damage.
  • 1977 – (Autism) A breakthrough study on twins finds that autism is caused by genetic and biological differences in the brain.
  • 1980 – (ADHD/Autism) Hyperkinetic Impulse Disorder is renamed to Attention Deficit Disorder (ADD) as they believe the main symptom isn’t hyperactivity, but instead difficulties of attention. “Infantile autism” becomes listed for the first time, and is seperate from schizophrenia. The DSM-III is published with these included.
  • 1987 – (ADHD/Autism) A revised edition of the DSM-III-R is released. It includes the term Attention-Deficit Hyperactivity Disorder (ADHD). “Infantile autism” is replaced by “autism disorder” – intensive behavior therapy is pushed as “revolutionary” in “treating” autism.
  • 1994 – (ADHD/Autism) Asperger’s Syndrome is added to the DSM-III-R. ADHD is divided into three subtypes: predominantly inattentive, predominantly hyperactive, and combined.
  • 1998 – (Autism) – The hugely discredited and completely false study on the MMR vaccine is published linking autism to vaccines with no scientifically valid or replicable proof. (This stalled Autism understanding).
  • 2000 – (Autism) Vaccine manufacturers remove thimerosal (due to the false vaccine/autism link) allowing crackpots to run wild on vaccine science and autism.
  • 2006 – (ADHD) A number of studies around this time show that ADHD persists into adulthood.
  • 2013 – (ADHD/Autism) The DSM-V is published. ADHD criteria is expanded to cover more of the age range of adolescents and adults. The three subtypes of ADHD are now called “presentations”, condition can be mild, moderate, or severe. All subcategories of autism are folded into one new definition. The condition Asperger’s syndrome is no longer considered a separate condition. Autism Spectrum Disorder (ASD) is defined by two categories – impaired social communication and restricted or repetitive behaviours.

Some quick takeaways:

  • Science said ADHD or Autistic people were brain damaged until that was disproven – instead our brains are wired differently in most cases. Science is prone to failure – lobotomies were considered valid and reasonable science.
  • All of this science had a male bias. Male-ness of ADHD and Autism was prevalent up until very recently when understanding began of feminine presentation of both ADHD or Autism.
  • Scientific contributions of cis women to this field have been constantly erased.
  • The scientific field has always been dominated by cis men.
  • The autism and vaccine “link” caused a massive delay in scientific research on autism – this significantly stalled a lot of research as massive replication studies were done (and no link was found – the methodology of the first study was terrible).
  • Adult ADHD wasn’t even recognised or researched until 2006. It’s still very poorly understood. Adult autism is similar.
  • Asperger’s is a term you should probably not use to identify yourself if you were diagnosed with it – you have Autism or Autism Spectrum Disorder (either of these is ok). Asperger’s syndrome is not a valid diagnosis anymore.

Why are cis women under diagnosed? A few key reasons.

Patriarchy – A potential cognitive bias explanation – Science informed doctors – Doctors informed science. Yay science? No, just bad science.

Science around ADHD and Autism has been patchy, as developments in understanding of these conditions has increased, we are beginning to see how much science has failed women especially.

In science on both these conditions – almost all articles from very early on till just in the last decade have always spoken to the prevalence of ADHD/Autism being higher in cis men than cis women.

Gender differences have been reported in the prevalence rates of ADHD, with the published literature indicating that the prevalence of ADHD in boys is 2- to 9-fold higher than in girls in clinical samples and 2- to 3-fold higher in epidemiologic samples.These findings are consistent with the 3- to 16-fold higher prevalence of ADHD in boys than in girls across European countries as well.

Citation

There’s a phenomenon in psychology known as a self-fulfilling prophecy. A summary is that when someone believes that something is likely to occur, they modify their behaviour so that thing occurs.

The early science focused on boys, the main research into ADHD/Autism that was done early on in preliminary studies focused almost entirely on boys. The presentation of these conditions in the DSM versions then informed doctors. Doctors then were less likely to ascribe ADHD and Autism to cis women due to the science.

Science then did studies into diagnosis rates of cis men and cis women. Men were more likely to be diagnosed with ADHD/Autism than cis women.

Can you see the issue?

While it’s very hard to prove a causal link here due to scientific rigour needed, it seems a fair assumption to me that as a Doctor; if a patient presented themselves as ADHD/Autism, I would be more likely to diagnose cis men rather than cis women with these conditions with confidence.

Now when I do this, cis men show up more in diagnosis studies, and then these studies are like – SEE THE SYSTEM WORKS!

Patriarchy – Science informed science to cover their asses. Neuroscience – It’s big brain time.

I don’t know how to say this without trying to scare you off completely but most science has a lot of issues. These issues are being addressed as critique of science in the past has been highlighting a lot of issues. But some of the worst science done has suggested theories that have no basis in reality. A lot of science was conducted based on the premise that ADHD and Autism occured more in men – so they did studies to find out why.

Neuroscience (study of the brain and nervous system) has run with some pretty wild theories over the years – let’s discuss the Extreme Male Brain Hypothesis.

The Extreme Male Brain (EMB) Hypothesis of Autism- This hypothesis states that male and female brains are wired differently; therefore Autism is more likely to occur in cis men than cis women as a result of neurological development due to gender differences or put simply cis men act like cis men because they have cis men brains, cis women act like cis women because they have cis women brains.

I mean looking at it, it seems reasonable – we’ve been taught that cis men and cis women are fundamentally different due to sex organs every chance we get from birth – why wouldn’t this be true of brains?

Then you realise that they are trying to say that cis women are hardwired for empathy and social competency, and cis men are are good at systemizing (understanding and building systems). This is a pretty bad leap of logic. When tested under scientific rigour – this didn’t hold up too well (but it is still a widely believed hypothesis).

The EMB is inconsistent with meta analytic research illustrating more similarities than differences in performance of males and females across psychological domains (e.g., cognitive abilities, social behavior, and personality) in childhood through adulthood

CITATION

The problem is that when measuring these neurological differences with actual people in the general population the traits they describe are present in both cis women and cis men, the overlap of these traits disproves the hypothesis. It’s like 1950’s level understanding of gender differences. To think that neurodevelopment won’t be affected by society and influenced by gender coding everything is bad science.

You can read the paper I have cited there for more critical analysis – but I think a lot of neuroscience is pretty awful at best – as imaging studies improve there may be more substantial proof of this, but current neuroscience has made many assumptions that are unreliable.

The brain is incredibly complicated, there’s neurochemicals, transmitters, receptors, impulses – your brain is doing a lot all at once – seeing, hearing, feeling, smelling, focusing attention, thinking… Reducing neuroscience down to neurological traits such as empathy brain and structural brain seems like an extremely irreplicable reductionist approach to me, especially when we know things like trauma can alter the brain itself.

Patriarchy – other biases at play – convenience sampling

A lot of issues with modern science and replication of results – has been convenience sampling. The field of social science especially has been challenged by cultural differences as most social science was conducted at universities using college students from affluent white backgrounds – this convenience sampling bias shook the very foundations of the field.

In the Autism/ADHD context it means a lot of research has been prone to this bias. When finding research participants you take what you can get, as there’s no way to legally mandate participation due to ethical violations.

In the case of autism this is very apparent:

In a qualitative review of 392 empirical articles obtained through a search using the keyword ‘‘autism,’’ it was estimated that 80 percent of the collective ASD study samples had been male on average, and of studies including both genders, only five percent (20 articles) analyzed dependent variables separately for male and females.

CITATION

A trend emerging?

Patriarchy. It’s just patriarchy.

I keep reading more and more about it, and the more I see, the more I know that we live in a patriarchal society.

Cis women are less likely to have their learning disabilities accommodated for than cis men. Cis women are less likely to be diagnosed by doctors. Cis women are less likely to be believed about their symptoms. Cis women are more likely to be given a diagnosis of anxiety or depression than either of these conditions correctly. Cis women are more likely to be doubted when challenging these diagnoses.

STOP GASLIGHTING CIS WOMEN

The other trend that keeps popping up is that women are better at adapting to our society (or specifically that women mask better than men their ADHD or Autism behaviours). I can’t stop thinking about patriarchy – this is because conforming is something cis women are expected to do more than cis men. Being different or speaking out is acceptable if a cis man but not if a cis woman.

I don’t know how to tell you that our society is ruined for cis women for those who didn’t know – but it is. It’s totally broken.

I kept reading through this and I keep identifying with the “feminine” experience of ADHD and Autism. Gender coding traits is awful – it’s a limited understanding of gender. It’s holding us back. [This has also made me research into what being non-binary actually means and I have realised that I am non-binary].

The list of reasons all points to one thing, fundamental issues with the structural nature of society. I was going to make this longer. I will provide a two searches for papers at the bottom but they are all dancing around the issue that sexism (conscious or unconscious) in science is a major problem, and the problem is caused by major problems with our society.

Academic institutes need to fix structural issues around participation and safety for ALL women – or we are going to keep getting garbage science.

Further Reading

Published by roryreckons

I am an ADHD/Autism/OCD advocate and independent ADHD/Autism researcher. I am training in 2021 to become an ICF Accredited ADHD coach. I write mainly about ADHD/Autism/OCD/Mental health issues, but will also discuss morality, abolition, and current affairs occasionally.

4 thoughts on “ADHD and Autism Care For Women Must Be Addressed

  1. Fascinating! Our current understanding of both conditions has heavily been influenced by sexism.
    The more and more I read about it, the more I realize I was lucky to be diagnosed with ADHD at age 6. ASD diagnosis got added when I was 13, shortly after DSM 5 was published.
    Many women are just getting diagnosed in their 40s, 50s, even 60s. Many others are diagnosed shortly after their children are, because they recognize the symptoms in themselves.

    Like

  2. This is the only article I could find about the experiences of women who have both conditions. This needs to change……

    Literally all others focus on one or the other, and most seem to focus on children. Nothing on adults……

    You are correct. It’s patriarchy and sexism. Science was created by humans. I’m currently enrolled in university, studying to be a researcher. As objective as we researchers try to be, we all hold biases. We live in a racist, patriarchal society. These biases influence science.

    Could you write more articles on intersectionality?

    How does race impact the experience of ADHD and Autism?What are the experiences of black people with ADHD and Autism? What are the experiences of Indigenous people? Are these communities receiving the proper support?

    Also explore the intersection of race, gender, and adhd & autism. A black girl will have different experiences than a white girl, because we live in a racist society.

    Like

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