Greetings Earthlings! 😀
This week after reading that British comedian Johnathan Ross’s daughter received an autism diagnosis late in life, I thought I’d write about my own experience of receiving an autism diagnosis as an adult.
As you may know from my blog intro, I was diagnosed with Asperger’s Syndrome a few weeks shy of my 24th birthday. With autism diagnoses on the rise in recent years, it seems hard to imagine that a person would not be diagnosed until their twenties, but this was my reality. As it turns out, I was far from alone in my predicament with such notable autists as Susan Boyle, Anne Hegerty, Dan Aykroyd and Gary Numan all receiving adult diagnoses.
So why are so many autists only being diagnosed as adults?
Leading autism experts have described a “lost generation” of autists who grew up during a time where autism was poorly researched and understood. Many high functioning autists did not fit the criteria for classic autism, and as such slipped through the diagnostic radar. It is only in recent years following the introduction of the spectrum concept that many previously undiagnosed autists are finally getting the diagnosis they should have received decades previously.
In my case, I was both academic and social in school, so no one really batted an eyelid or questioned that something was amiss. My meltdowns were put down to stress (you would not believe the amount of school reports to my parents that said I needed to chill!😂) or temper tantrums, or just plain being a drama queen- oh if my teachers/friends only knew that I wanted none of the attention that my meltdowns brought! 😛 It was only after I failed to grow out of my quirks in college and worsening social anxiety that my family sought to diagnose me (you can read the full story here).
In fact, statistically speaking, the vast majority of women with autism do not get their diagnosis until they are adults, often going unnoticed due to our ability to socially mask, or in some cases, misdiagnosed with conditions co-morbid with autism. Moreover, as I have discussed in numerous posts, women often present with completely different autistic traits to men, but these differences went unnoticed by the medical community for decades as the original descriptions of autism were based on a largely male cohort of patients.
So you’ve got your autism diagnosis, what happens now?
For many, the diagnosis comes as a relief. It feels as though you’ve got the final missing piece of a jigsaw puzzle, like you’re just seeing the full picture of yourself for the first time. However, it equally takes a while to get your head around it all, and the experience often leaves you with more questions than answers. You’re handed this life changing diagnosis, but realistically there are little to no supports available for autists over the age of 18 in most countries. So where does that leave you?
Here are some tips that I found helpful for dealing with a late autism diagnosis:
Educate yourself- I’ve always had a thirst for knowledge, so whenever I don’t understand something I hit the books. Learning about autism was one of the cornerstones to helping me to better understand and embrace my diagnosis, allowing me to be a little kinder to myself in my symptomatic moments.
Check out some autism blogs/diagnosis stories- I found that reading the stories of other autists was quite comforting as I was coming to terms with my diagnosis. You’re not alone in this 🤗
Link up with local autism support groups/charities– there’s no better source of information and available supports than those who’ve gone through an autism diagnosis in your area. They will all have been through the same thing as you, whether as a recently diagnosed adult or as a parent to autistic child, and will be able to provide you with the best resources available in your locale.
Try CBT– as I’ve discussed in a previous post, CBT wasn’t really my thing for helping me manage my symptoms, but it was highly beneficial in those early few months after my diagnosis to have a professional there who knew about autism to talk things through and to help me to understand my behaviours better.
Talk about it with your friends and family– in many ways, an autism diagnosis is not a journey we walk alone; our friends and family walk it with us. They are on a journey to better understand you too and will want to be there to support you in every way you need.
At the end of the day, while it was not ideal receiving an adult diagnosis, the personal and mental benefits that I have attained in recent years have been completely worth it. I finally understand myself and feel comfortable in my own skin. At long last, I’m able to fully be me in all the weird and wonderful ways God made me to be 🙂
Hope you enjoyed this post dear Earthlings! 🙂
Thanks so much for sharing this. I was first diagnosed with autism at age 20, even though I present with many stereotypical autistic symptoms and always did. In fact, when I was around six, a family relative asked my father to consider I might be autistic. He was in denial though and still is.
Anyway, I”m so happy you eventually found out about your diagnosis.
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