As an autistic diagnosed with Aspergers a year and a half ago I remember how it felt to not have a diagnosis.
I seemed to need that written affirmation as to who I was, and while I’m happy I have my diagnosis I often wonder if it would have made such a difference to me if the neurotypical psych in the office had not recognised me as an autistic. If I had answered the tick list differently and given my history in a way not satisfactory to their requirements I would have ‘failed’ and been misdiagnosed.
The worry I have is how people in adulthood are diagnosed. You are required to give a childhood history and many rely on their parents to help them with this. I had no parental help at that time so could not ask them for feedback. I did the best I could describing the alienation, the way I lived in an alternative reality dictated by special interests that I depended on to check in with after a hard day at school.
I had to recall and describe how objects have always been there dependable in their consistency unlike people.
That after a day of feeling ostracised and misunderstood by peers in secondary school, I could come home and open my cupboard doors to my Marilyn Monroe collection with everything arranged perfectly and my videos in order of appearance and date.
My 1950’s movie magazines set out on the shelves so the covers showed…lined up in a glorious technicolor riot of comfort.
My prize Marilyn statue in pride of place.
This was a collection, yes, but it was visual tactile auditory reassurance that I mattered.
If I had not been given a diagnosis would I still be autistic?
There are some that would say no, I had failed the test therefore I could not be.
I believe this to be wrong.
I’m not saying everyone who has been told they are not autistic is, but I’m saying that if you have been tested and are not happy with the result, have no means of being re-tested yet feel like you are indeed a spectrumite, you may have to look to online testing for your own personal affirmation.
The visual tick lists in place are often male dominated, females have masked and learnt to ‘fit in’ so lack of eye contact and using expressive hand gestures may have been learnt, reacting to and reeling off sarcasm may be done with ease. Meltdowns for females are often implosive and tearful so you are liable to be labeled a drama queen. Explosive? You’re then a diva.
Males may have learnt to banter, make eye contact and explosive meltdowns can be just passed off as bad temper, not recognised as frustration and anxiety or attributed to sensory overload.
We are judged on body language or lack of it. We are judged on empathy or lack of it!
There are many of us undiagnosed as autism was not recognised as easily years ago.
Parents are joining online forums and groups on Facebook seeking support for their children and end up recognising themselves in the adult autistic postings.
Migraines are then recognised as sensory overloads, temper accepted as meltdowns and the feeling of being on the outside never really fitting in is lost as they find a community of acceptance.
Many will feel anger at years lost with no help or support. They will feel frustration at the misunderstandings socially they and people close to them will have suffered. If only they had known sooner!
The relief is incredible to finally find a tribe of kin whom they feel they have known forever.
Some will not seek a diagnosis, they feel they do not need a ‘label’ and they are right.
I personally look on my diagnosis as a recognition of being neurodiverse but by no means does my diagnosis invalidate someone who is not diagnosed.
There is a misguided hierarchy in the autism community and debates often seem to be ‘won’ with the question of “Are you diagnosed?” This is wrong…so wrong as at one point even if it was when we were children we were undiagnosed too.
To the Unrecognised I say welcome, with me personally there will be only acceptance and a need to help and educate you and on behalf of you.
We Are One.
Read about Emma
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Cathy says
July 13, 2017 at 9:47 amThankyou Emma. I for one was one of those ‘lost’ people who was seeking answers for my daughter…and found a whole new community..one which yes I DID finally understand and feel part of. I don’t have diagnosis, and I often DO feel still ‘left out’ and even fake sometimes in an extra bad spate of worry about who is and who isn’t. I may or may not one day seek my own..but I have to say, I feel lucky enough to have met a lovely group of autistic people who have all accepted me as me, which is great, and it just so happens I do think I am autistic. But in the end…I just happy that I have found a place to fit.