Autism

Could I Be On The Spectrum?

I’ve wondered for over a decade, and it’s taking years to find out

I’m one of a growing number of women who in middle age are realising they might be on the autistic spectrum. This is due to a massive level of under-diagnosis, especially among girls, in the 1960s, ’70s, ’80s and ’90s. Indeed, autism wasn’t added to diagnostic manuals until the 1980s, and Asperger’s Syndrome, a ‘high functioning’ less obvious form of autism, was not recognised until the 1990s.

Today, as publicity about autism becomes more common, many older people who’ve perhaps struggled with feeling different, possibly unaccepted, their whole lives, are starting to recognise that they too, have autistic traits. The question for many, myself included, is whether these traits are severe enough for them to be clinically diagnosed as autistic. I’m on a two year waiting list to find out.

I have never fitted in. People just don’t get me, and although I’m possibly the most trustworthy, conscientious, and plain talking person you’ve ever met, people often misjudge me. Not in a good way.

Autistic people think differently. They often take more notice of things and they often feel over-stimulated by noise and social experiences. Growing up, I often found social experiences stressful and I was in a permanent state of anxiety. It’s still something I struggle with, but I have a lot more control over my life and environment now, so it’s much easier to handle.

After watching documentaries about autism, particularly Chris Packham (a British television presenter) who was diagnosed in his 40s, and realising that it’s not all about ‘meltdowns’ and behaving badly, I started to realise that many people with autism have much less obvious symptoms. And because girls are less inclined to act out, be aggressive, and are more inclined to internalise difficult feelings, these girls don’t get the attention they need to get a diagnosis, the result being, they don’t get the help they need to reach their potential either.

Boys are more likely to force the issue with disruptive behaviour and aggression that is more likely to get them expelled. Girls are more likely to sink into depression and end up with an eating disorder or other mental health problem. That was me, when I was trying to fit in and failing, year in, year out, worn down by bullies and excessive criticism at home. I really wasn’t coping at all and was hopelessly unable to express myself well.

So while boys might rage and have fits, I was just really upset, with rock bottom confidence and I felt increasingly rejected by society.

Mum said I was shy. I didn’t say much and avoided contact with strangers. It made me uncomfortable. I was often anxious when I was away from home. School was a total nightmare of loneliness, bullies, over-stimulation and noise. I couldn’t stand all the screaming in the playground.

I wanted to be left alone, but that was the one thing people wouldn’t do. Bullies cornered me in the corridor and classrooms. Even life at home was very noisy, with my opera singer mum and tyrannical dad, who didn’t understand me and didn’t want to.

I first thought ‘that’s like me’ after watching a programme about autism — I did an online test, the results of which indicated that I might be on the spectrum. But I dismissed it, thinking I was probably just relating to similarities in my own personality, but not wanting to leap to conclusions. However, as time has passed, I’ve seen more about it, and mentioned it to a healthcare professional some years later, who suggested it was probably just a natural reaction to childhood trauma, rather than autism. I accepted that and carried on with life.

It was when, following an emotional outburst, my sister asked, ‘have you ever considered that you might be autistic?’ I reconsidered.

It was a defining moment. It wasn’t just me that saw it. She’d grown up with me, and she saw it too. Of course, as kids none of us knew, but it transpired that she’s been calling me her ‘autistic sister’ for years, when telling people about her family. And because she’s spent her career working with people with learning disabilities and severe autism, she should know what she’s talking about.

That made me decide to seek a diagnosis. A lot of adults who feel they are autistic self-diagnose, and that’s good enough for them. A lot of people in the autistic community online say that self-diagnosis is acceptable. After all, who wants to be a burden on the over-stretched healthcare system? I certainly didn’t, which is another reason I didn’t pursue it for years.

However, I now see that autism explains so much of my life, and with others seeing it too, I think I am justified in wanting that professional opinion, and even if they say I’m not, I know it have many autistic traits and relate to others with such traits, so it’s kind of reassuring to feel that I may have spent my life as a misfit, but now at least I understand why, and know I’m not alone.

© Susie Kearley