Today I was at the hospital with my youngest who is undergoing assessment for autism. Everyone’s kind of sitting on the fence about it because our lovely H is highly sensitive, highly anxious, resists change and has sensory processing issues. However when he feels comfortable he is an articulate and engaging communicator and he has a phenomenal imagination which doesn’t sit comfortably with the ASC diagnostic criteria.
We agreed to continue monitoring him and to review his progress once he starts school in September – all well and good. Then the Doctor made a statement that made me catch my breath…’I usually find that people diagnosed later in life are diagnosed late because their presentation and traits are milder than those diagnosed when they are young.’
My heart: NO NO NO! Are you going to let her get away with that massively unfair and inaccurate generalization?
My head: Keep your cool Lizzy, don’t alienate this perfectly nice and respected Doctor!
Fortunately I stayed calm and replied ‘In my experience the people diagnosed later in life appear to have milder traits because they have become experts at masking and camouflaging those traits in order to fit in with the neurotypical world around them. In actual fact their difficulties may be severe but they have kept these hidden for fear of being judged.’
To be fair to the Doctor she did listen to my comments and I appreciate that professionals involved in diagnosis, work with frameworks, checklists, criteria, they work in black & white. But Autism isn’t black and white, it’s a RAINBOW 🌈. Each one of us is unique and whilst of course there are central common traits we have vastly different strengths and challenges.
I honestly don’t know if H is autistic. Some days I’m positive, others I’m not. What I do know is I don’t want him to become a ‘lost child’ like me. Undiagnosed for 42 years, confused, angry, awkward, misunderstood. Probably my greatest hurt over the years has been that feeling that no one understands me. People have misread my behavior, misread my intentions, judged me against their neurotypical rules which are not my rules! My brain is wired differently. I have my own ‘normal’ and it’s not the same as a neurotypical persons.
My life and my self esteem has improved immeasurably since my Autism diagnosis and to a lesser extent my bipolar diagnosis as I now have effective medication to manage my recurring cycles of depression. I don’t want to label H or force a diagnosis on him when he’s so little. Neither do I want to play down his difficulties and miss the chance to get him the support he needs for school.
So I will continue to love and nurture him, play with him, teach him and hopefully someday soon we’ll be able to reach a consensus on his neurotype.
In the meantime, please try not to see in black & white. Remember Autism is a rainbow, that all behavior is communication and that the child/adult/co-worker/employee you find awkward, weird, angry, blunt/rude, shy, may not understand your expectations and rules. So please don’t try and mould them to ‘fit in’. Follow their rainbow, it will be colorful, exciting and fun. Who knows, you may even find a pot of gold at the end of it !