Guest Post: “Why have we overlooked autism in women and girls?”
MumsnetGuestPosts · 02/04/2019 15:28
Think of someone with autism. Who do you picture? I doubt it was a teenage girl, or a middle-aged woman. Most people think of autism as mainly affecting boys, and our stereotypes tend to be very male; think Rainman, or Sheldon from The Big Bang Theory. But those stereotypes are one of the reasons that thousands of autistic girls and women are missed, mis-diagnosed and sometimes mistreated.
Until recently, experts believed that there were about five times as many autistic males as females. Current research (by Gillian Loomes from the University of Leeds) reveals a much more balanced male-to-female ratio of 3:1, based on high quality studies in the general population. By implication, there are thousands of autistic women and girls who have not made it to diagnostic clinics and are not receiving any specialist services.
Now, in a new book, Girls and Autism: Education, Family and Personal Perspectives, we hope to raise awareness of these autistic girls and women, so that parents, teachers and GPs will think "Could this be autism?" when they see a girl with social and communication difficulties and rigid/repetitive behaviour. Autism Spectrum Disorder is diagnosed based on behaviour; there’s no blood or genetic test for autism. By drawing on real life experiences of girls, their mothers, teachers, researchers and other professionals, we have explored why autism is often missed, and how autism can look rather different in girls compared to boys. While it’s clear that every girl on the autism spectrum is unique, there are some characteristics you might notice and should look out for.
- Struggling socially – may find it difficult to make or keep friends, can’t ‘put herself in someone else’s shoes’, or may find ‘doing social’ exhausting, needing lots of downtime alone afterwards (eg after school).
- Communication is different – may take things literally and find it difficult to tell if someone is joking or being sarcastic, may seem to stick to a ‘script’ (eg for small talk) or copy others (eg to know when to laugh).
- Finds change difficult – more distressed by unexpected small changes to plan or routine than others her age, dislikes surprises, needs certainty and sees things in ‘black or white’ terms.
- Sensory sensitivities – can’t bear certain sounds, textures, sensations (eg, light touch, fluorescent lights), but loves and gets lost in other sensory experiences (eg spinning objects or self).
- Intense interests - has all-encompassing interest in one, relatively narrow topic/collection, and it may be hard to redirect her attention or conversation to other things.
- Poor mental health – most autistic girls (and boys) suffer a lot of anxiety, and depression (and even suicide) can be a problem, as well as eg eating disorders, ADHD, clumsiness…
“Why have we overlooked autism in women and girls?” you might ask. I think there are at least three reasons.
First, research has often excluded female participants – partly because researchers expected autistic females to be so rare. The result is that what we think we know about autism from research, is actually what we know about male autism; it may or may not apply to females on the autism spectrum. And that research bias matters, because our diagnostic criteria and processes are based on those (mostly male) findings.
Second, most people have a male stereotype of autism, and so parents, teachers and GPs are less likely to think ‘autism’ when they see a girl struggling socially, than when they see a boy with social difficulties. We know that girls get diagnosed on average later than boys, and are less likely to get an autism diagnosis when showing the same autistic features. Part of the problem may be so-called ‘diagnostic overshadowing’; if an undiagnosed autistic girl develops an eating disorder, for example, a clinician may diagnose anorexia, but fail to dig deeper or recognise that this is anorexia and autism. And that matters because the causes and therefore best treatment for that eating disorder
may be very different in an autistic girl; perhaps an insistence on staying at an absolutely specific weight, rather than any concern about appearance or body shape.
The third reason is that autism may look different in some women and girls, compared to some boys and men. For example, while the intense special interests that are characteristic of autism typically have an unusual focus (eg, telegraph poles), for autistic girls the topic is often unremarkable (eg, a boy band, one breed of horse), and may not strike others as peculiar unless they find out just how intense, specific and all-encompassing it is. Some autistic females also tell us that they deliberately ‘camouflage’ their autism, for example painstakingly copying how a socially-successful girl in their class dresses, walks, talks and does her hair. An autistic friend of mine even trained as an actor to learn how to ‘act normal’, many years before she received her autism diagnosis.
For all these reasons, autistic girls are going undiagnosed, with significant consequences for their mental health. In the diagnostic clinics we have worked with, there are women coming for first diagnosis of autism in their 70s, after a lifetime of being misunderstood, and sometimes mis-medicated for mistaken psychiatric diagnoses. If their autism had been recognised, supported and their differences respected, their lives might have been very different. They might not have been so vulnerable to bullying, abuse, and isolation, with all the negative effects on their self-esteem and mental health. Raising awareness of girls and women on the autism spectrum is the first step to change that.
Girls and Autism: Education, Family and Personal Perspectives (Routledge, £29.99) is out now. 20% discount and free delivery with code A008. Discount available until 30/06/19
Francesca Happé is Professor of Cognitive Neuroscience at King’s College London who leads psychological research on autism. She will be returning to this post on Monday 8 April to answer some questions.
NopeNi · 02/04/2019 16:13
This sounds brilliant. I've only scan read it for now but am place-marking to come back later!
JohnMcCainsDeathStare · 02/04/2019 17:27
It certainly is a problem. I think the reason is that if a person is outwardly quiet and compliant most of the time they can be invisible, regardless of their mental health taking a pounding.
ArgyMargy · 02/04/2019 17:34
It's not just autism - coronary heart disease was overlooked in women for many decades and the stereotype heart attack victim is always a man.
Gertygypsey · 02/04/2019 17:39
I am so glad research is finally being carried out into this.
Minniemagoo · 02/04/2019 17:45
Oh very interesting esp the 'camoflage'. I find that DD tries so hard to fit in that those around her consider her ' a little bit autistic', How I hate that. She deserves better, more understanding instead of dismissal.
Greenyogagirl · 02/04/2019 17:49
Myself and other women I know on the spectrum seem a lot more able to mask and copy others so it looks like we’re fine when in reality we’re only acting and internalising the struggle
WeMarchOn · 02/04/2019 18:53
I picture a 36 year old woman - me 🤣
Oddgirlout · 02/04/2019 19:49
I’m very pleased to read this. Will be buying the book and coming back for the QandA.
WeMarchOn · 02/04/2019 19:59
Message deleted by MNHQ. Here's a link to our Talk Guidelines.
Oddgirlout · 02/04/2019 20:33
Message deleted by MNHQ. Here's a link to our Talk Guidelines.
Bonkerz · 02/04/2019 20:40
My DS was do asd when he was 8 after 2 years of assessments. Puberty was hell. Autism ruled out life.
He was my reference for autism.
My 13 year old dd is now being assessed for autism.
I NEVER considered her autistic despite her having signs (tip toe walked/ immature speech/ social issues/ OCD behaviour) it was only when she started self harming and we saw Cahms did they say she shows all signs.
I guess because my asd son was aggressive and had such erratic behaviours which meant he didn't cope in mainstream I thought that was autism.
Dd is very different. She suffers massive anxiety but self harms and has physical pain from this.
I battled for 2 years to get DS diagnosed and yet my dds diagnosis seems to be battle free.
CharlottesInterWeb · 02/04/2019 21:04
@Bonkerz we had the same experience but it was my daughter who we struggled to get diagnosed - because of all the aforementioned masking, mimicking others, compliance at school, appearing sociable, etc. We had a hell of a time and a lot of damage was done, both to her and my mental health as a result.
Thankfully she was later diagnosed at age 8 (we were told this was very young for a girl to receive a diagnosis) on our second referral - but only after a period of awful mental health issues resulting in her being unable to attend school for 8 months.
My 5 year old son was diagnosed within months of his first referral - with the paediatrician stating that she could "tell the first time she saw him that he was on the spectrum"!
Educating people about the female presentations of ASD is really important. I'm glad it's being discussed here.
PrettyAmazingGrace · 02/04/2019 21:06
Thankyou for this post today, Professor and Mumsnet.
I have aspergers and keep hearing the 'but you're ok!' comments, as though it's a compliment; and completely missing how much work goes into creating this inferior version of 'normal' that I present.
I read a FB meme that struck a chord with me - autism isn't a programming error; it's a different operating system. That describes it so well for me, including the way being on the spectrum is currently perceived as somehow inferior and certainly 'other' to the norm or mainstream.
AGnu · 02/04/2019 21:18
Pretty sure I'm one of those misdiagnosed women. I finally got up the courage to ask the GP for a referral about 4 years ago but was put off when she told me I needed to book a double appt & come back to prove to her why she should refer me. Saw a different GP about 2 years ago for something unrelated but I'd been sent into a major anxiety attack by her calling me on a different phone than I expected. She asked a few questions & put in a referral straight away before even dealing with the real reason for the appt.
A few months later I was assessed & they decided it was social anxiety because I met all the criteria other than needing a routine, apparently. Except I do need a routine & it has to be at least a weekly thing. I can cope with "this is what I do on Mondays" but try to do every other Monday, or every 2nd Monday of the month & my brain just can't compute. I get so stressed by trying to remember it, even if I write it down & have a reminder on my phone, that I mentally check several times a day every day whether it's today & end up so mentally exhausted that I can't keep doing whatever it was. I've quit jobs because they were shift work or part-time/variable days & I couldn't cope with it.
They also dismissed my sensory issues as "some people don't like things". I can't eat meat except chicken - the texture makes me gag. I can't deal with the smell of bananas because I can feel the squishy texture in my mouth as soon as I smell it, despite not having had banana in my mouth for at least 25 years. Don't even get me started on the feel of grass/sand... I do, however, love the smell of raw, gone off chicken. It makes me gag but I can't help smelling it. I've never yet licked it... Yet...!
That was 18m ago & I plan on asking for a second opinion at some point but it's only recently that I've been able to think about the possibility without panicking. It'll be a while yet before I could actually do it. Don't think I could cope with being dismissed again.
EskSmith · 02/04/2019 22:22
Pretty much described my 10 year old DD there. I have suspected as much for a long time. She masks at school and our doctors have said she needs to be referred by school to get an assessment. I'm really concerned that she will simply not cope with the transition to secondary school but have hit a complete brick wall at getting her assessed.
Am I missing something? How do I get taken seriously by medical professionals and the school?
MumUnderTheMoon · 02/04/2019 22:24
I think that the reason that girls mask so well is because we teach them to. If a girl is selfish we will tell her to be kind, of a boy is selfish we shrug it off. If a girl isolates herself we worry about her and "encourage" enforce social interactions a boy isolates himself it's "boys will be boys" there is similar attitudes to rudeness, anxiety, demanding what they want.
PetsFactor · 02/04/2019 22:34
I genuinely had a community health worker tell me when my daughter was 3... “it’s unlikely it’s autism because she’s a girl”
I knew right away that was a crock of rubbish , thankfully
SosigDog · 02/04/2019 22:44
I’m convinced I have undiagnosed autism. I have no way to get a diagnosis though, and obviously it’s too late for me to get the support I should have had from childhood. The damage has already been done.
Aspieteach · 02/04/2019 22:58
I have no way to get a diagnosis though, and obviously it’s too late for me to get the support I should have had from childhood.
Have you tried seeing your GP? I'm 52 and only got diagnosed a couple of weeks ago. It was a long wait from initially seeing my GP to having the appointment for an assessment, but it was worth it. The lovely practitioner who saw me said that she is seeing lots of women in their 40s and 50s and that the oldest person she has diagnosed was in her 70s.
Interesting guest post. Lots of things rang true, especially the desire and ability to camouflage.
Apart from close family, I've (so far) only told 2 people in RL about my diagnosis: the headteacher at my school and one friend. The HT said that she had no idea about the anxieties, difficulties and stresses that I explained to her, because I'm very good at masking and mimicking and I just get on with things.
The friend that I told has genuine expertise in autism (she provides training and is a published author on autism). We were walking together when I told her and she literally stopped in her tracks as she had no idea.
AutisticHedgehog · 02/04/2019 23:13
In my opinion, one of the reasons is that myths and misinformation about autism, particularly HFA and Asperger’s, are constantly perpetuated so people, including women and girls, either don’t relate to this description or do not want to be “labelled” as something that has so much stigma and prejudice attached to it.
Sadly many of these myths and prejudices are regularly displayed on MN and allowed to stand. When I have challenged MN on this I have been told maybe not to read such threads if it upsets me.
So I think MN really do need to take a look at the autistic ableism that thrives on this website as in addition to being hugely discriminatory against autistic people, it will almost certainly be discouraging some women reading the website to seek a diagnosis.
AutisticHedgehog · 02/04/2019 23:19
For example, this post - despite being flagged to MN - is allowed to stand:
The person who posted that some ASD people have a particular look identifies in her post that she has relatives on the spectrum. I do too, and there IS a particular look
AutisticHedgehog · 02/04/2019 23:32
And then these from the delightful “support thread for those married to someone with Asperger’s” thread.
Why would anyone want to fake it, when There is a high chance they could meet someone who is on their level and understands them. That is the side I fail to comprehend, or is it that some people (mainly men I fear) just think that their thoughts and behaviour trumps all else, so no introspection is needed.
It's a little like someone with an IQ of 20 pretending to be a genius until you are in a relationship, then reverting back to normal IQ incapable of understanding why you want to be with a genius..
This thread has made me quite sad. DS, 23, with AS has a serious girlfriend. He says she accepts him as he is. I want to tell her to run for the hills. I appreciate that H is both an arsehole and an aspie.
The weariness and exhaustion that comes from sharing your life with an AS partner seems to be a common theme. It is relentless. I totally see the extra child comments. Stroppy teenager in my case.
Because if you think they are difficult to live with, just try divorcing one.
ALL THE BLOODY TIME This phrase, the caps, the tone, sums up this whole thread and life with an AS partner.
Racist, sexist and homophobic, because he can't put himself in any other person's place, which is also upsetting.
Understanding he has Aspies helps me digest his behaviour but goodness it is very very hard to live with day in and day out.
colouringinpro · 03/04/2019 00:25
Thanks for this article mumsnet. My dd finally got an ASD diagnosis after many years of sensory and anxiety issues. It makes total sense to me and her. Unfortunately my wider family don't get it at all. "She seems alright" and make comments that imply her Sunday night two hour back to school anxiety attacks are either me exaggerating or not parenting properly. Fortunately I've had good support from friends and her school.
AugustRose · 03/04/2019 00:33
We have finally got a referral for my DD who is recently turned 17, I have witnessed all of the behaviours listed in the OP over the years but only one teacher mentioned autism (to my DD, not me) which is why we have delayed going for a referral. The other reason being that in the area we live, Cumbria, I have been told by HCPs and parents of other autistic children that it is very difficult to get a diagnosis for girls who don't show the same, 'more noticable' traits as boys
Seniorschoolmum · 03/04/2019 00:56
So glad this is finally being addressed.
I’ve got to within a few years of retirement without diagnosis. I’ve been “wednesday’s child” (thanks, mum), tiptoe walked my entire life, speech problems, social problems, I’ve masked behaviour for work. Hopeless at most relationships except with my ds, and my sister who is like me.
I can’t wait to retire so I don’t have to put up with other people’s judgey nastiness any more. I’m very tired.
If this helps the situation for other girls, it can only be a good thing..
To comment on this thread you need to create a Mumsnet account.