Published on 12, July, 2020
Hi everybody,
Apologies this may be a bit long...
I'm a 27 year old male, I have a good career, did well at school and university and can probably be considered "successful". Underneath all of this I have ALWAYS struggled in life. People I work with have the image of me as calm, methodical and outgoing, however this is all just a mask and one that is extremely tiring to constantly wear.
A bit of a back story...
For my entire adult life I have struggled with severe depression, anxiety and when things become too stressful would have breakdowns where I would just want to shut everything out and hide. Quite often these resulted in being sign off work and causing problems with relationships. My brother died in a car crash when I was 18 and this always seemed to be a likely cause.
As a child I had friends, did well in school and had no real behavioural problems. I was very quiet and my school reports always pointed to me "being shy", "needs to come out of his shell". Emotionally I was behind my peers, it did not take a lot to make me upset and cry and I often felt bullied but in this was quite often simple jesting and I was told I needed to toughen up. My mother kept trying to enrol my in clubs and activities but this was always met with tears and severe worry.
I was quite obsessive as a child and had to organise my room so all objects were aligned and at exact right angles to each other and could tell if something had been moved. When furniture was re-arrange I would find this distressing. At any time I would have fixed hobbies and would only want to collect and play with the same things. An example being some figures called "Monster in my Pockets" that I would organise in colours and groups for hours on end and had several hundred... I knew them so intimately if I got any new ones I could tell people if I had it, in what colours and quantities. My mum often doubted me and checked, I was always right.
I am absolutely rubbish at making friends and actively hate social occasions. Most of my friends I have now, I have known for 20 years and do not really see the need for more. At parties and gatherings (which I hate) I am always really quiet and isolated and people’s attempts to converse with me are met with short specific responses.
I have highly sensitive hearing and hate both loud noises or lots of different noises. I can hear the electricity buzzing in plugs and standby appliances, I can also hear the high pitched frequencies furbies use to communicate with each other that others cannot. I am often told by people I am deaf as I always mishear or have to ask people to repeat. However, I have had a hearing test which came back as perfect.
People often say I am cold, aloof and grumpy all of the time and show little emotion or caring-ness. Which hurts.
Fast forward to the present
Although struggling I have got through life and weird things about me were just attributed to other things. Fairly recently my son who is 5 started primary school and had extreme difficulty settling in and was excluded several times. CAMHS and CDC became involved and he was diagnosed with ADHD and has been referred for a CDAC for Autism Spectrum.
My current boss and I always joke about how similar we are in many ways and most often we come to the same conclusions separately as though we are telepathic. His wife is an autism life coach and she was advising me about my son and said it sounds like he had HFA or Aspergers. She then made a comment about my boss and how she thinks he definitely has Aspergers and started talking about things he does. As she was doing this the penny dropped for me, it sounded like me!!!
After this I have done extensive research and the more I read the more I believed I could have aspergers. Reading people’s stories were like reading something I had written about myself. All of these little things I attributed to other issues and being odd were all traits of autism.
I did an AQ50 test and scored 42. I started consciously monitoring my behaviour and there were several "weird" moments. Twice at work people tried to shake my hand and ended up with me giving them my cup of coffee and a piece of paper I was holding... This was all several months ago and last week I plucked up the courage to see my GP. I have now been referred for an assessment. I am both scared and confused. I don't know whether I will be happy or distraught if I am diagnosed. The good is it finally makes me understand why I struggle with things people find natural. Distraught as it means that is the way I am and always will be.
If you have read this far then I'll be really surprised and grateful I did not mean for it to be this long...
For those who have do you have any advice or experience from the assessment process that may help me? Also how long from referral to diagnosis does it normally take?
Thank you
Grant
I'm new here too, and was only diagnosed on Friday with ASD and was diagnosed with ADHD in November.
I just wanted to offer a fist bump of solidarity over the lack of family understanding. I'm 34. When I was diagnosed with ADHD in November, my parents found it very hard to believe and now they are doing the same thing over my ASD!
Thank you both for taking the time to read (and also to CoggyBear who replied on the other thread - not sure why it created 2 posts..)
I am sorry to hear you had a similar situation to me regarding your brother Marjorie. It sounds like for both of us it was the straw that broke the camels back. It seems very unfair that diagnosis is not offered everyone should be entitled regardless of their situation. It does not surprise me though as my GP did make a comment that she would need to think about the referal and if there was any benefit, after asking me what difference it would make and I said I did not know.
Thanks for the reassuring words Coggybear (on other post). I do have a general question regarding diagnosis, what exactly does it entail and do my family need to provide input?
I am a little worried that my mother may glaze over a lot of my issues when I was younger... she seems to have a distorted view on reality). When my son was first receiving a diagnosis of ADHD and Autism was suggested, she was very against both of these diagnosis' and insisted there was nothing wrong with him, the doctors were wrong, we were wrong, everyone was wrong.
She also has a very rose tinted (well actually completely distorted) view on both mine and my deceased brothers childhoods and behaviour. She tells people how good we were and how there were no issues. But this is completely false... My brother for a start was extremely aggressive and would vandalise the house, assault people and eventually ended up in a youth hostel at 15 with no GCSEs and drug problems. He once tried to set fire to our house and burnt all of the carpet (and his eyebrows) in our bathroom. Having learned about ASD I also believe my brother and mother also suffer(ed) from it (and ADHD for my brother, my son reminds me so much of him). But, I don't think my mother would be prepared for that yet and it may be best to get myself and my son through the process first.
Thanks
Hi gramit, welcome to the forum.
I am the messy untidy version of you. I can relate to most of what you say.
It was the death of my brother, which first triggered depression in me and a spiralling downwards into problems at work.
I eventually discovered aspergers and suddenly realised what my problem was. This was the one thing that ticked all the boxes for me. I am retired, with no current mental health issues, so diagnosis was not offered as an option. I was told to get in touch if I needed help from the community mental health team. So I remain undiagnosed and have given up trying.
I have found much help and support from people on the forum. I have also studied the subject of autism in more detail, to understand my own problems.
Best wishes
Hi Grant
I found your very detailed discriptiion of how life has been for you extremely interesting and could relate to it in many ways.
As to the diagnosis process, it seems to vary wildly from region to region with some adults getting thro' the process quickly and others having a much more difficult time.