It crept up on us, autism, again. Almost overnight, really.
We have been an autism family for a long time now. Nearly fourteen years. The diagnosis happened at age four.
For a while, we thought we thought we had the better of the diagnosis. We struggled in the early years and then persevered to the end of primary school. We ran through to secondary school and scrambled over the edge running through GCSEs and proudly into sixth form. There were cricket clubs and part time volunteering and summer internships.
Autism was always there of course. It was there refracting through friendships and it was there in the anxious pursuit of perfectionism and turned up in clarity around morality and excessive empathy. But over the years we had developed our toolbox polished by years of trial and error. As a family, we knew what to deploy and when. Autism was like a fifth member of the family at the dinner table, still watching us, but one who had learnt not to throw food down in a tantrum, pass the dishes and occasionally even offering to do the dishes.
We had even started OSW to share our story to help others.
Then adulthood arrived.
The birthday
The voting forms arriving through the letterbox.
National Insurance numbers.
Conversations about work, independence, relationships and the future.
The world seemed to shift overnight.
It was as if we were suddenly confronted by a perfect unrealistic image of what an 18-year-old is supposed to be. Independent. Confident. Organised. Social. Ready.
And then, we had to measure ourselves against it and feel the gaps again.
In many ways it felt like receiving the diagnosis for the first time.
The grief wasn’t the same. The fear wasn’t the same. We were older and wiser than we had been fourteen years ago. But the adjustment was real.
And no one prepares you for this in your autism journey. That adulthood once again will come with a whole new set of assumptions and that you will experience a second collision between your and society’s expectations.
This is our advice to all families.
- Be ready for the shift.Remember that those perfect images of adulthood exist mostly in our heads. They are stories we tell ourselves about how life is supposed to unfold.
- The gap between what all young people think they should be doing and what they are actually able to do has never felt wider. Those turning 18 have been brought up on a diet of unrealistic expectations spun by social media. They have gone through a pandemic that disrupted some of their most important developmental years. There is economic uncertainty. There is intense competition in the workplace now and questions about what work will even look like in a future increasingly shaped by artificial intelligence.
- For families with autism in particular, know that you have already achieved things that once seemed impossible, you now have experience. You have perspective.You know that progress is not measured against someone else’s timeline. You know autism has always been there and always will. What has simply changed is the lens through which you are viewing it again
Perhaps that is the challenge of adulthood for all of us: learning to separate who we really are from who we think we are supposed to be. And if the last fourteen years have taught our family anything it is that there are many ways to build a meaningful life. This needs you to walk your own path. Often nothing like the one you originally imagined.
This blog is written by Zainab Kizilbash, founder, Our Small Wonder and her 18 year old son, K. Ali, who was diagnosed with autism age 4.
