21 October 2015 – Notes For ASD Research

Newcastle University is undertaking a research project for ASD – The Adult Autism Spectrum Cohort-UK:

Background: Very little research has been undertaken into the life experiences of adults and older people on the autism spectrum and their relatives, and how lives can be improved

Part of it is filling out a questionnaire about your experiences with life, education, professional services and the system, etc. At the  end they ask for any further details. I added this…

My Asperger Syndrome went undiagnosed for 33 years, and during that time all the symptoms attributed to it was constantly misinterpreted – mainly negatively. They were seen as as a wide range of things: general anxiety, social phobia, chronic shyness, attention-seeking, and all attributed to my being “a loner”. Meltdowns were seen as attention-seeking or sulky temper-tantrums to get my own way. I was called “controlling” (in the worst possible sense), “domineering” and “demanding”. I was a perfectionist who flew off the handle at the slightest mistake because I was all these things. No one imagined it was all actually down to one thing – that suffering from a condition I didn’t know, nor understand, or had even heard of back then, and because of this constant negative opinion of me, my low confidence was shattered and had dire consequences for me as a young child.

Many complex things came together to create a severe nervous breakdown when I was 12 and I attempted to take my own life. I was subsequently diagnosed with depression and treated with SSRIs (which didn’t really help that much after the initial few weeks). This was the label I was left with for the next 20 years and no one looked any further – despite my being in a mental health unit for a year and spending two or three years in CBT from the age of about 19.

My mother knew there was something “amiss” and sought to understand and teach me to the best of her ability. She constantly sought help, even from when I was a young toddler, but she was dismissed and rejected. The only time I ever received help was when I tried to hurt myself. But even then, no one looked further than the end of their noses at me. I was labelled a “depressive” and “attention seeker”. All this and I was still only a child. It made growing up incredibly difficult and I was constantly in and out of seeking treatment for “depression”, and suffering from too many phobias to count.

As a young adult I was completely dysfunctional but threw myself into singing and music, which took my entire focus and drove me onwards through life. The label of “depression” followed me, and I even lost a job because of it. I found it difficult to work, but managed well enough thanks to “neurotic” patterns, tendencies, and obsessive ways of dealing with things I didn’t like. When I finally turned my attention to working in IT, I finally felt happy at work and enjoyed it very much.

Unfortunately, this was shattered when – after a severe bout of pneumonia during an exceptionally stressful time in life – I developed severe fibromyalgia. After many months fighting the pain, I finally had to give up and resign from work. The condition has become steadily worse, and keeps on getting worse. The condition affects just about everything that could flare up negative “symptoms” of the Asperger’s and the two do not pair well. With the condition, and from the medication, I suffer from confusion, memory loss, and extremely severe pain – all contributing to create constant and quite dramatic meltdowns. I have no idea how to deal with the pain and the Asperger’s together, and there is no one around to help. I have no professional input, no therapy, or clinician to give advice or support. My partner and I struggle alone, with the help of my parents over the phone.

I feel I should not have to struggle alone – and whilst it is right that children get the most benefits from research and funding (I would not want them to grow up like I did), it seems unfortunate, even unfair, that adults are forgotten – particularly those who are adult-diagnosed. I cannot imagine I am the only one who was finally diagnosed only to be subsequently ignored by the system and left to continue to fend for themselves.

I was sent the details of this research project by NHS NELFT (North East London) – yet I have been entirely ignored in the last year since my diagnosis, with this being the first contact since. It should be the norm to receive as much help in adulthood (when you arguably need it more, as there are decades of issues and bad habits to be relearned in light of the new diagnosis, as well as the trauma of knowing a difficult life could have been made easier with one simple diagnosis) as it is for children who suffer all forms of ASD.

It is especially important that it be more well-known that females are just capable of having these conditions as males. Even when I did know a little about ASDs, it did not occur to me females could have it too, and so despite thinking the symptoms were very familiar to me, I did not think I would have it because of that fact.

I only came to realise I really could have the condition when on one single visitation with a very astute social worker, she pointed out to me she was certain that was what my problem was, not depression. When I researched it, for the first time I read all of my “symptoms” in one place, under one name. I finally had my answer – but unfortunately I still had to fight to get my diagnosis. It seems that is all I have ever done with this condition – fight the system for help, for support. But none has been offered, despite constant requests. Now I have simply given up asking or hoping, and will just have to continue fending for myself and struggling on.