Females with Autism – The Tragedy of Ignorance

girl-on-path  It’s been known about for a while now, but still nothing is done about it.  The diagnostic criteria for autism were all researched on only males with the condition.  So why, we must ask, bearing in mind the recent revision of the DSM, did they not revise those criteria with this evidence in mind?  The ICD is also currently under revision, no doubt the WHO will ignore this glaring anomaly too.  Autism isn’t the only condition in which females present differently.  To my surprise, recent research showed me that this is the case with ADD/ADHD and bipolar too (but then of course they are genetically related to autism).  They say “it’s a man’s world” and in many ways it still is.  Females are suppressed, ignored and mistreated in religion, culture, employment, so it’s not too much of a stretch to point out the misogyny present in the medical profession too.  You can’t be autistic – you are a girl, just a hysterical/neurotic woman, mindset.

The NAS has information on autism in females, and research is out there highlighting that females are more able to mask their difficulties, more likely to be compliant, less likely to act out in the way males do, as well as having better compensatory abilities and yet so many females still struggle to get diagnosed with autism due to the stereotypical beliefs that prevail among clinicians.  So many autistic females are misdiagnosed too, with disorders such as anorexia (anorexia rates are higher in autistic females so clearly the cause of anorexia is not being looked at adequately), BPD and generalised/social anxiety.  Some research claims that females are genetically protected from autism and that this is why the rates are at least 4:1 for males to females.  I dispute this, I personally believe there is no difference in the rates of autism between males and females, it’s just recognition that is the issue.  In this research, it states: “Instead of focusing on specific male risk factors, our focus needs to change to understanding how the male and female brain differ and what that means for autism risk,” and “A lot of what we do in research and intervention are things we have learned from researching boys, and this needs to be addressed,” says Ami Klin, chief of autism and related disorders at the Marcus Autism Center at Emory University in Atlanta, Georgia. He points out that girls are often excluded from studies.  There is also an interesting article in the SEN magazine here.

Here is a media article about how girls with autism are being failed and the gender bias that exists.  So why, when there is so much evidence out there of this problem, are autistic girls being ignored?  As a female parent on the autistic spectrum myself, with two autistic daughters, two of us faced much difficulty in obtaining diagnosis.  The clinical expertise is just not there, and it astounds me that UK clinicians are not kept up-to-date with latest developments in autism research.

Girls are diagnosed later than boys when they do get diagnosed, often meaning years of struggling in the school system without support for their difficulties.  The later you are diagnosed the more likely you are to suffer mental health difficulties.  Females are so much less likely to be referred for assessment: http://www.examiner.com/article/girls-with-asd-suffering-silence “Although there has been a dramatic increase in the number of children diagnosed with autism spectrum disorders (ASD) over the past decade, statistics indicate that boys are being referred and identified in far greater numbers than girls (Attwood, 2006; Wagner, 2006). In fact, referrals for evaluation of boys are approximately ten times higher than for girls (Attwood, 2006).”

I wonder, how many times someone who suspects they are autistic, is assessed and not diagnosed (assuming correct diagnostic outcome).  I would imagine the numbers are infinitesimally small.  So would females be asking to be assessed without reason?  I was once asked, having said I felt different from other people, how would I know that.  That’s the weirdest question.  You can’t really explain something like that you just know, from watching and listening to others, their views, experiences, interactions etc. that you are not like them.

The biggest problem for many autistic females is that they internalise their difficulties, they are passive.  In the education system this means they are model pupils, they don’t disrupt the class and just fade into the background, so no problem – right?  This is why so many autistic girls end up with anxiety, depression, anorexia, self-harming, school phobia.  The more years you go undiagnosed, the harder it gets.  By the time a girl hits secondary school the social expectations soar and the concurrent decline in their ability to cope becomes greater.  Primary school is relatively easy.  If your daughter doesn’t have a close clique of friends it’s easier to disguise as they are all running around playing randomly at that age, friendships can be fickle.  But in secondary school, the playing subsides and it’s all hanging together in gangs gossiping and bantering, and someone with autism finds that extremely difficult, so their differences are highlighted meaning they become a target for bullies.

Lorna Wing described sub-types of Asperger’s: active-but-odd, passive, aloof and stilted.  I once did a poll of Asperger’s females on a forum and so many said they fit the passive* sub-type.  This would lead to the logical conclusion that there are many undiagnosed females out there.  If the parent doesn’t realise their child’s traits could be autism and the school doesn’t pick up on it (parents often rely on schools to point out where their child is having difficulties and advise regarding referrals and interventions) then the child misses getting diagnosed.  Boys on the spectrum will often be more aggressive and schools will then want something done about the disruption of their classes.

So why did the DSM ignore this issue?  It’s bad enough that they removed Asperger’s as a diagnosis – even Autism Speaks published a study declaring that Asperger’s is a distinct form of autism, so overall more people will struggle to get diagnosed with ASC, but as females are already at a great disadvantage in having their condition recognised, this is compounded and the problem will not get resolved unless action is taken over the diagnostic criteria and training of clinicians.  There are countries outside of the USA that use the DSM, including sometimes in the UK.  The ironic thing is, that females with autism pass on the genetics to their children (I know others outside of my own family) and research has also identified the womb environment as contributing to autism, and yet females are tragically ignored.

Edited to add this link to fabulous paper which puts it so well: Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience

Thought for the day:

Image

*Passive
Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

Advertisements

4 thoughts on “Females with Autism – The Tragedy of Ignorance

  1. Up until recently I had only known males with Autism.
    Now that I work with an organization supporting young adults with autism I am finally meeting women with this condition, and the difference is very striking in how it presents.

  2. Pingback: Females with Autism – The Tragedy of Ignorance | The Autistic Womens Empowerment Project

  3. “Girls are diagnosed later than boys when they do get diagnosed, often meaning years of struggling in the school system without support for their difficulties. ” That would be so unfair for girls with autism. I hope they could do something about it.

    • Sadly the wheels of change move way too slowly to help many girls. Girls are often misdiagnosed meaning they get the wrong treatment too. The ICD11 revision needs to be firmer about female presentation and new diagnostic tools need to be written. Otherwise clinicians will keep following the male criteria and it takes time to change mindsets too. NHS NICE Guidance needs to say more about females also.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s