BENISON O’REILLY is a pharmacist and medical writer. SEANA SMITH is a best-selling author and well-followed blogger on family and health issues. Their book, The Australian Autism Handbook is an updated edition of the trusted Australian guide on how to raise a child with autism spectrum disorder.
ABOUT THE BOOK
A fully updated edition of the widely praised and most trusted Australian guide on how to raise a child with autism spectrum disorder.
An essential, comprehensive and INCLUSIVE guide for parents and carers of kids with autism. Advice from leading world experts delivers the information you can TRUST.
Offers SUPPORT AND GUIDANCE on early signs of ASD; diagnosis; medical theories; schooling and growing up; intervention programs; treatments; dealing with emotions (parents and child); what not to say to your child and how to help them.
SHARES the lived experience of fellow parents who are raising kids with autism and we hear from adults who have autism to hear their perspective.
So much has changed since 2008: the language of autism, diagnoses, the understanding of disability, society, culture and agency. This new edition sparkles with new ENERGY and new horizons.
Chapter 5. Autism in girls
With Tahlia, it was mostly her language that we noticed. She was babbling from about four months, but it never improved, it was always babble. She wasn’t saying ‘mum’ or ‘dad’ or counting or doing any of those very fundamental steps towards building her language. And then there were other little things, like she would be very interested in lining things up. Things like cats and pets, or bottles or pens. They were all very organised, all the time. We thought these were quite a few strong indicators, even from when she was a year old.
And her father and I were onto it very early. We were very much in support of never letting our children fall between the cracks. If anything, we would prefer to be considered a bit OTT than to just ignore issues and let them become bigger.
My son was diagnosed in 2008 when he was five and my daughter wasn’t diagnosed until she was 10. We say it’s actually only because of his diagnosis that she got diagnosed, that she would have been missed otherwise. And then my other daughter was diagnosed at eight.
And I’m autistic as well. I discovered it through them when I was in my 40s.
We’ve aways known that autism can affect girls. When Leo Kanner wrote the first scientific report on the condition in 1943, three of the 11 children profiled in his study were girls. Arguably the most famous autistic person in the world, Temple Grandin, is a woman. Yet somehow, over the years, the experiences of girls with autism have taken a back seat to those of boys.
That’s not to say autism isn’t more common in males – it almost certainly is. Being female appears to be protective for many developmental disabilities, not just autism. There’s also evidence that girls need a greater number of genetic mutations than boys to develop autism.
Today four boys are diagnosed with autism spectrum disorder for every girl. But it’s increasingly believed that the way we diagnose autism is biased towards males. Present methods aren’t capturing all girls with autism, making the difference in rates between the sexes look greater than it actually is.
If we look at children with autism and intellectual disability, girls seem to look very similar to boys in terms of symptoms and the sex ratio slips to around two boys to every girl. This suggests the girls missing out on a diagnosis are those with typical language skills and an IQ in the average range.
Studies have found that boys are more likely to get a diagnosis of autism than girls, even when their symptoms are equally severe. Girls are also more likely than boys to be diagnosed late, or not at all, missing out on understanding and support in those vital childhood years.
Many young women describe a miserable adolescence, being misdiagnosed with other conditions – from depression and anxiety, to ADHD, to personality disorders – before finally receiving an autism spectrum disorder diagnosis in adulthood, when all the difficulties they’ve encountered begin to make sense.
Having embraced their new identity, many of these young women go on to become articulate and inspirational spokespeople for neurodiversity. If you have a daughter with autism, you may wish to seek out the writing of some of these women online. We list some specific resources for girls in our Resource Guide.
Why are girls missing out on diagnosis?
Because much of what we know about autism we’ve learned from studying males. The DSM-5 and the testing instruments we use to screen for and diagnose autism (such as the ADOS and ADI-R, discussed next chapter) were modelled on the experiences of male children.
Yet the more we learn about autism, the more we realise that it can look different in girls. If we’re not looking for the right things, it’s hardly surprising that some girls might slip through the cracks.
Fortunately, things are changing for the better. New diagnostic guidelines are including specific information on autism in girls and more and more clinicians are learning about subtle signs of autism in females, especially those with average to above-average IQs and no speech disorders.
My daughter met her milestones, some earlier than normal:
- She was sitting at three months
- She had words and small sentences at one year old
- She spoke 500–800 words at two years old
- She was toiled trained at two and a half years
- She has always answered to her name
- She has always smiled
- She has always been able to track with her eyes
- She has always been able to make eye contact
- She loves hugs and kisses.
I started noticing issues when she was three:
- She would organise in a way that was specific
- She coloured pictures in the correct way, but she refused to deviate or use any other colour than the proper colour
- She had specific special interests – rocks/crystals, animals, bugs, documentaries and science, and she would not show interest in any other subjects
- She started to copy/mimic others around her
- She would have long meltdowns
- She loved routine
- She would regress when a new situation arose or a routine was broken
- She would occasionally bite herself or bang her head on hard surfaces
- She ran in circles, flexed her fingers as stims
- She would repeat some phrases – echolalia
- She hated certain clothing, e.g. tags and seams
- She would refrain from conversation with kids her age, but would hold conversation with adults
- She was quick to lose her temper, going from 0–100 in 0.5 seconds.
Much of this still continues. And more. She has also had a few seizures but because they came and went quickly, epilepsy wasn’t on the radar.
I didn’t have much help, but I went to a GP with my concerns, and he did recommend a paediatrician. So, I went. I went when I had tried everything under the sun to help her. The paediatrician diagnosed her with ASD Level 2, sensory processing disorder, ADHD, oppositional defiance disorder and learning difficulties at the age of five.