Autism. Being autistic. It’s a thing that some see as a deficit, and that some people see as difference.
For some though, it is a devastating. Some parents of autistic children have to deal with comorbidities in their children such that the children don’t survive beyond 10 years of age. Some cannot engage with society, and require a lot of support.
As a rideshare driver for Shebah, rideshare by women, for women, and licensed to carry unaccompanied minors, I have quite a few neurodivergent regular passengers. One is a voluntary non-verbal Au+ve teenager. One was an AuDHD 8 year old. Another is an AuDHD teenager. An older Au+ve teenage girl speaks non-stop at a loud volume. Another Au+ve teenage girl is very afraid of conflict and retreats into silence, even when she has needs.
I also drive rideshare for Uber, and really appreciate that passengers can ask for a quiet, warm car in their booking – indicative of autism. I’ve had a few of those passengers, too.
A few days ago, there was a very unusual Shebah booking – quite ordinary on the surface, requesting an XL car with a front facing seat.
By the end of the drive, when my passengers were safely at home, we had discovered that four of the five people in car were autistic. The child, yes, and during the process of the child’s diagnosis, mum was identified as AuDHD. During the parents’ educational program for pathological demand avoidance (PDA), dad reported identifying with each aspect as they were going through the course. So, self-diagnosed, for now, with autism. And me, the 51 year old driver with an autism diagnosis from just 5 weeks ago. It struck me as extraordinary.
Autism, being autistic, is named in the DSM-5-TR as “Autism Spectrum Disorder”.
So what is the DSM-5-TR? It stands for the “Diagnostic and Statistical Manual of Mental Disorders, version 5, Text Revision.
For Autism Spectrum Disorder, it sets out assessment criteria for children. Each criteron needs to be addressed by levels of support needed, described by these levels:
- Level 3 – requires very substantial support.
- Level 2 – Requires substantial support.
- Level 1 – requires support.
The criteron, themselves, are to do with:
- Ongoing issues with social communication and interacting
- Patterns of behaviour or interests in:
- Movement and/or speech
- Routines
- Narrow areas of interest or focus
- Sensory issues
- For children, these symptoms must be observed by the age of 8. However, as each child will present differently, the full impact of their autism may not be known until they “hit their limits” – the point beyond which may result in a meltdown or withdrawal.
- They must also have signify impairment in social, occupational or other critical areas of function. Occupational in this case doesn’t mean work, it means functioning, as in walking, talking, moving, lifting, carrying, holding – the things that an occupational therapist works assist with.
- Lastly, these symptoms must be evaluated against other disorders, such as intellectual disability or global development disorder. However, these can also be comorbidities – multiple conditions at the same time.
- There also needs to be an assessment, either has or does not have, intellectual impairment, and whether or not there is a known genetic disorder or environmental factor.
So, there is quite an assessment process for children. Adults have the same assessment criteria, but there will be a lot of questions about childhood experiences.
The first stop should be your child’s paediatrician, or, your GP.
So what is autism, for me, and what was my path?
I’m 51. Back in the 1970s, autism wasn’t something that girls had. Nonetheless, I have memories of arguments over wearing track suit pants; I hated the way the fleecy lining felt. Flanellette sheets were also on the hated list. Since adulthood, I have bought neither tracksuits nor flanellette sheets.
I also remember constant admonitions to “be a good girl” and “be a little lady”. So, it would seem I was doing something that I need to given these reminders.
I remember walking on the knuckles of my toes, and my piano teacher couldn’t understand how my 8yo hands could span an octave on the keyboard; she appreciated it, nonetheless!
When I was 7yo, I had the reading age of a 12yo. An IQ test put my 10yo IQ at above 140. I excelled at school, almost without trying, and my marks were one off a perfect score in the Grade 7 ASATs. I did the Australian Mathematics Competition in 1985, 1986 and 1987. In 1985, I was the top student for the district. The other two years, I got high distinctions.
I was painfully shy and introverted and had one or two friends, usually boys. I spent my lunchtimes alone in the library.
Obviously, I learnt to mask and assimilate early on, which explains my high scores in masking and assimilation on my autism assessment.
If I mask so well then, why did I seek an assessment, at the age of 51?
When my late husband passed away, it seemed like the autism peaked, and my mask cracked. I had reached the limits of my capabilities. I was rattling off key dates in am almost rote fashion, such as the dates of the “practice run”, his death, his funeral, interring his ashes, my cat’s decline and her passing, about two months after my husband.
Somehow I got my masks back into place, but things weren’t right, between the undiagnosed autism and the grief. My work suffered and my decision-making was impaired. Still, it wasn’t until I took myself off to university that the cracks appeared again.
Now that I have the diagnosis that, yes, I am autistic, I can ask for supports and accommodations at university.
Reframing my life, all 51 years of it, through the autistic lens has had its moments. (See “unshed tears and eccentric cams“.)
Realising the lifelong issues I’ve had with my then undiagnosed autism near brought me to my knees, but, I found a way. (See “empowered and emboldened by AI“.)
No doubt, there will be more ups and downs as I discover more insights about lifelong issues that have been because of my autism. But, in all, I’m proud to join the club and lend my voice to advocacy for an autistic-friendly society.
Oh, and babushka dolls? Apparently, the way I see time when it comes to time management and scheduling is rather autistically unique. Each task, and the time it needs, is a little babushka doll that goes into the bigger babushka doll that represents the day. Go figure.
The Auld Skald's Fudgel 