“What is Autism? Breaking down the stereotype”.

Are you wondering what exactly is autism? Has someone suggested your child might be autistic? Are you confused about what autism ‘looks like’ (I say that loosely as autism doesn’t have a ‘look’)… or has your child been diagnosed with autism spectrum disorder (the medical diagnostic term) and you are thinking ‘wow, I see many of my child’s autistic traits in me… maybe I am autistic too’?

Firstly, let me tell you about the journey to my own diagnosis of autism in late adulthood… it may resonate with you.

My youngest son was diagnosed autistic in 2018, age 8. This also followed with auditory processing difficulties, GAD (generalised anxiety disorder) and coeliac disease. It was not a good time for him… or my family. It also coincided with three terms of school refusal (physically, mentally and emotionally draining for all of us). Prior to this I always thought he was ‘just a little bit quirky’ and a child who I proudly look back now and think ‘was great at playing independently’. (Of course there is nothing wrong with that, it was just my observations and recollection of him as a young child). Apart from this, to me, he was an average baby, reaching the milestones and in general good health. I might add, it takes a great teacher to notice your child is struggling in certain areas, enough to warrant a conversation of concern.

Around the time of the school refusal, I was wondering why? Why now? What am I doing so differently that he does not want to go to school? Why is he struggling so so much? Up until our school psychologist meetings, no one mentioned that he might be autistic. Not once. It was the school psychologist, after several meetings, who first suggested that my son ‘may be autistic’. Hmm, well he doesn’t line up his toys, or rock in his bed, or head bang (my ‘understanding’ of autism at the time…. based mostly on how the media portrays autistic people)?!

Although strangely, the mention of my son possibly being autistic did not surprise me… maybe because I have always felt a sense of connection with him… his ‘quirky’ ways and mannerisms…

I remember thinking… what is autism? I don’t think he ‘looks autistic’ (that’s my first face-palm moment… tip: if someone says they are autistic, please don’t ever say those words ‘you dont look autistic’… instead, be curious. Ask questions if you are unsure).

He was diagnosed a few months later with autism spectrum disorder after co-ordinating appointments to see a clinical psychologist, paediatrician and speech pathologist (for a child under 13 in Australia - at the time of writing this… in Western Australia, children need a paediatrician, a speech pathologist and a clinical psychologist to ALL agree on the diagnoses of ASD - autism spectrum disorder). ASD is the diagnostic term given under the medical model of disability. We refer to it as autism.

So, over the course of a year or two… I started doing my own research. Studying a BA Psychology at the time, I have always had an interest in the brain and how the mind works.

I was curious. What is autism?

This is where the stereotypical thoughts of autism comes in… think Rainman, Sheldon, or Sam from Atypical; basically, any movie or tv character that has ever portrayed being autistic has not done autistic individuals any favours. Autism is a spectrum. TV and movie characters are based on the medical model of autism, and portray characters that are usually autistic ‘savants’, that is, high-functioning geniuses that have special abilities and extreme IQ’s.

Here is some information on autism and identifying as an autistic person:

Autism is on a spectrum… except it is not a linear line. Simply saying someone is ‘a little bit autistic’ or they have a milder form of autism trivialises what it means to be autistic. We have struggles. Constantly. We cannot ‘switch off’ our autism.

Autism is a spectrum of ‘disorders’… except we are not ‘disordered’. This is the term referred to in the medical model to diagnose someone with autism.

We are not a missing piece of a puzzle (and we certainly don’t need to be fixed as if we’re broken human beings)…

We are neurodivergent.

Our brains are wired differently.

We have a different way of perceiving and interacting in the world.

We are neurodivergent human beings living in a neurotypical world.

No two people with autism are the same.

As Dr Stephen Shore (autistic professor of special education) said “If you have met one person with autism, you have met one person with autism”…

Most people with autism use identity-first language, that is, ‘I am autistic’ rather than ‘I have autism’. This is because autism is inherently who we are; it is an essential part of our existence. However, others use person-first language, that is, ‘person with autism’.

Anyway, I have now digressed (which many of us autistic people do!)…

This brings me to the final question… ‘I see so many autistic traits that my son has in myself… maybe I am autistic too’?

In my final year of my BA Psychology degree, I conducted a research proposal “The Experiences of Late-Diagnosed Women with Autism [Spectrum Disorder], Without an Intellectual Disability, in Australia” via qualitative methodology.

My research into this question found:

• the diagnostic criteria of autism (not gender specific) is based on the male phenotype and mainly in the child population. This has not changed since autism first appeared in the DSM (Diagnostic and Statistical Manual) in the early 1980’s

• autistic females present differently to autistic males, which explains why the majority of autistic females are under-diagnosed and under-represented, or mis-diagnosed with mental health issues

• autistic females ‘mask’ our identity, that is, “we develop coping skills, strategies or techniques use to mask characteristics of autism during social situations”

I also found that it is incredibly common for mothers whose children are diagnosed, to then be diagnosed themselves, and thus we now see more women in mid to late adulthood being diagnosed with ASD.

If you’ve gotten this far… well done. Its a lot to take in.

It was part way through my research proposal (after waiting 6 months to see a clinical psychologist/diagnostician in Perth, who specialises in autism diagnosis in girls and women) to finally receive my diagnosis.

I am autistic… at 45 years of age! Two years after my youngest son was diagnosed at 8 years of age.

In a nutshell… what is autism?

• autism is a neurodevelopmental condition that affects how we perceive the world; how we think, act and interact with others and our environment

• an autistic person is neurodivergent and we describe a group of autistic people as being neurodiverse (as opposed to a person who is developing typical in terms of cognitive ability and intellect, that is, neurotypical)

• autism is life-long

• an autistic person may be challenged in areas of social communication and interaction; possess restricted, or repetitive behaviour; may (but not always) have an intellectual impairment; may (but not always) have other genetic or chronic health conditions (known as co-morbids)

For instance, I am also diagnosed with fibromyalgia, Raynauds, Ehlers Danlos (joint hypermobility), autonomic dysfunction (postural orthostatic tachycardia syndrome) and anxiety, but I do not have an intellectual impairment.

If you are interested to read the DSM-V (current version as of 2021):

Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD | CDC

Thank you for taking the time to read about my son’s and my own journey of autism discovery, but more importantly, for opening your mind to what autism is, and hopefully, helping to breakdown the stereotyped presentation of autism (especially in women).

Nat x