My story and The adult diagnosis system, has anybody else found this a difficult process?

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When I was a young lad I was diagnosed with dyspraxia, I had many problems throughout school, mainly struggling with the work.

School was a difficult time for me, the teachers use to moan to my mum that I didn't listen, I didn't try and I was just a "naughty boy" the truth is that I just completely didn't understand anything the teachers were trying to tell me.. I tried and tried but it didn't work.

I ended up getting singled out on a regular basis from answer questions, to going up to the front of the class to read. This all became very overwhelming, especially reading in front of the class sent my anxieties through the roof. My escape was to misbehave as I knew I'd be sent out and I could avoid all attention on me.

I always found it hard to make friends, I was always picked on and bullied over the way I spoke. After many lessons of perfecting my escape method the students began to laugh, they began to acknowledge me for popularity reasons rather than the guy who gets picked on. This stuck for years until they grew up and left me behind. But when my behaviour it started it was my method of feeling normal and like I fitted in.

I ended up disliked again and beaten up a few times, I sworn to myself that I'd never get bullied again so I started boxing to which I quickly became obsessed with. I became obsessed due the the sculpting of my body, girls started noticing me and all the boys wanted to be my friend. This obsession lasted for 8 and a half years training 6 days a week only a handful of times I didn't attend training.

No friendships I've ever had have ever lasted long though, I often got play wrong. I was always boisterous and a lot of my play evolved play fighting. I didn't understand the social rule that your not actually meant to hurt people during that process. It wasn't until I was 19 when a friend explained that I was really hurting him to which I was mortified, I thought everyone liked to play like that. I rarely recognise my behaviours unless they are explained to me in black and white.

I realise I've gone on a bit and there's a lot more to my story and I need to keep to my original aim for this post but to give you an idea about my day to day struggles, I suffer from anxieties, attachment issues, lack of social imagination, I am very tackles and I always miss out on conversational cues.

I worked with autism and something clicked in my head, how can I have dyspraxia, all the things I was meant to struggle with i excelled in, I was a fantastic sportsman I did a lot I wasn't suppose to do.

I started to research and started to realise that I ticked most of the boxes for aspergers. I decided to take the barron and choen test to which I scored 32.

I feel I was failed by my doctors surgery, when I saw the doctor I was prepared with notes(as expressing myself verbally and effectively can be very difficult)

The doctor read the notes and commented "don't you think there's a few to many symptoms there? And then interrogated me about it. Luckily I had my partner there who helped me explain and kept control of the situation for me.

I was referred to a secol who the passed me on to a group called dash. I met with a lady who promised to help me but never emailed me like discussed. I then went back to the doctors and the whole process started again. It took me 4 months to do this circle and due to the stress of not knowing I ended up off work for months due to anxieties over the situation.

I personally feel for somebody who has aspergers as an adult the who process, the waiting about, all the phone calls you are required to make, in my case taking lead of the situation. I personally can't drive things as I become overwhelmed yet there was not enough awareness on the gps and support workers part.

I have now given up in a diagnosis as the who process is to stressful for me. The build up of getting somewhere to find out you've gone round in a circle and not actually got anywhere. I am left with so many questions yet I'm fearful to have that situation and process in my life again.

I want a diagnosis for my piece of minds but is there an alternative method rather than going through what I found to be a complete failure of a system to cater for potential aspies.

I don't quite know what I want out of this, it's 6.30am I haven't slept due to my mind being preoccupied with whether I have aspergers or not. It's really getting on top of my and I wanted to get a few bits off of my chest, although this is actually very vague on what I struggle with.

If you've read this far and your wondering what the hell you've read, than I want to thank you for taking the time to at least try and make sense of this.

Mike

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  • Posted

    Go for it. At least you may have an explanation. without knowing age and country I'm unable to estimate what to expect. I found getting a diagnosis gave me an explanation and slowley led to an understaning of strengths and weaknesses.

     

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  • Posted

    there is hope Mike my son got diagnosed last year and he was 33 years old I had always known that he was on the spectrum but back in the day there wasn't any resources available for children who had high functioning autism, so I had to do the best I could for him over the years but as he got older like you he had lots of questions he was diagnosed with dyslexia when he started university, but didn't get enough support whilst he was there and dropped out. anyway he main concern, he wanted to understand why he found it so difficult to read peolples emotions and why he could not react "properly" to them like you he wrote reams of notes and took them to his gp accompanied by his partner, he ended of becoming very emotional when he was there, the gp sent him to be seen by a specialist phychiatrist. when he got the appointment to see her he took the same notes with him which she read they were quite extensive, and they had a chat and she quite simply told him she had no doubt whatsoever that he had Aspergers. I know it is stressfull for you but it seems it is just as stressfull for you not knowing take yourself to another GP or ask yourGP for a secoung opinion if the first one was hopeless dont give up hope I dont know your age but it took 33 years to prove something I already knew but it gave my son peace of mind.  I really hope you find your peace of mind  good luck.
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  • Posted

    I understand this must be really intence for you, but don't give up you are entitled to a diagnosis. My son is now 34 and I have known his whole life he was on the spectrum but back in the 80's it was just so difficult to get anyone tested unless they were severe low  asd, high functioning aspergers/high functioning autism didnt stand a hells chance in getting a diagnosis. So I dealt with the conditions and all the little problems that can come with it by myself as my husband was often away (he was in the Royal Navy) I believe we did ok. my son at 32 went to his GP, because he decided he wanted a firm diagnosis like you he wrote everything down took his partner with him, like you my son is very physical an excellent sportsman even now still plays rugby every week. his GP was so moved by my sons distress at not knowing he sent him to a Phycholgist for assesment the appointment took about 3 weeks to come through, and he also took what he had written to his appointment to see her, she had a chat with him read his paperwork didnt really ask any formal questions she said she didnt need to because from what my son had written about himself it was clear enough for her to see he had Asperges. He was so relieved and that is why you should not give up if you cannot find a sympathetic GP in your surgery than change surgery no brainer really. I know it will be hard to make changes especially a new dr but if you can acheive the end goal it will be worth it. I dont know where you live  somtimes it can make a difference it shouldnt but it does "post code health lottery" My daugher is now having exactly the same problems as you with tring to get someone to take her seriously, so to help my family I am going to try and get tested as I know I am on the spectrum but at my age I wasnt bothered but I will do it if it helps add weight to my daughter getting a diagnosis, I also have three grandsons who all display signs of Asperges, two have already been referred to child development teams so hopefully they wont have to go through what you and my daughter are going through right now. I truly wish you the very best of luck.

     

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    • Posted

      Hi I am 53 and new I was always different to the other kids when I was at school. I struggled to get a diagnosis but.Last year I was finally diagnosed with having high functioning autistic spectrum. I feel so relieved to understand why I behave the was I do.
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    • Posted

      Hi flowergirl6 I was diagnosed with autism august 2014 at a place in Morpeth Northumberland. I was relieved because I now know what I am dealing with.
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    • Posted

      Can I ask what's high functioning autistic spectrum? I no my son has a form of autism but can't get him to leave the house

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  • Posted

    Hello Mike, have you got an Autism/Aspergers support group in your area?  After many years of trying to cope on our own and going to the GP.  We went to our local ASD support group and have now got the help we need.  I know I am on the Autistic Spectrum, but not so sure now that I have Aspergers as when I looked up a Social Anxiety website they showed that the symptoms of Aspergers in social situations are lack of neuro development pathways in the brain and not typical social anxiety.   Going to the group brought us relief, because we were talking to people who have had all types of different life experience of Aspergers/autism.  I mentioned that I knew I had Aspergers or Autism and that I had been looking for an answer all my life, working two jobs so I could afford to have psychotherapy.  Then they offered me free psychotherapy with a therapist trained in Autism spectrum disorders. I have to wait two more weeks till session. I will post how I get on.   Mike you are driven to find an answer to allievate your anxiety and symptoms, you have overcome all the challenges of dyspraxia by training as a boxer.  You are your own best friend.
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  • Posted

    I think you should go for a diagnosis as you will have a piece of mind also there would be more help for you and more people that you could reach out to just to talk to.

    I am currently going through something like you, at the age of 15 I was diagnosed with agoraphobia I was put through the mental health but unfortunately never worked I am now 21 and have been put through the system at least 6 times now with each diagnosis being different to the point where I had post traumatic stress disorder, agoraphobia, social phobia, and OCD traits. Every time I went through the normal routine of the mental health and it just wasn't working they had no clue what to do for me so I went for a new assessment and luckily enough I had a man that was a specialist in Asperger syndrome and he done a quick test with me if I scored 6 out of 10 or over I was entitled to the 'bigger' test that would tell me if I had it or not which I scored 7 out of 10 the man said that with all my past info and with what I said on the day it seems like I have it but a very mild case he has put me in for the bigger test but I have to wait 6-8 months it's a bit of a pain waiting because I have no help in between waiting for this and I'm currently fighting for P.I.P (personal independence payment) as I struggle to work but I think once I have the test if I do or don't have Asperger syndrome I will know what I have and what help is out their for me. To be honest I can't wait! I have 4-6 months to wait for this test everyday it gets me down what pulls me through is knowing that it's not long before my right diagnosis

    I do hope it all goes okay for you and you get somewhere which what ever choice you make!

    Alice x

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    • Posted

      Hi Alice,

      This has really got on top of me, I haven't worked for 6 months due to anxiorites and sensory issues, also I have very specific needs which make finding work rather difficult.

      I had been waiting for over a year when I called seqol and they told me I'd slipped the net, the told me I'd have to start the process again, this obviously caused me a lot of stress and knocked me back quite severely. Thankfully I had somebody who could help me (I'm not very strong on the phone) and they kicked up such a stink seqol arranged an emergency appointment and I have me assessment on the 8th of June 2015.

      You've seemed to have gone through a lot, and no doubts a lot of confusion. I know exactly how that feels and how hard it can be not knowing your true identity and having to endure multiple tests along with waiting a long time. The assessment process should be a lot quicker really!

      I really hope things work out for you and that you get the right diagnosis soon so you can move on with you're life.

      Thank you for commenting on my post,

      Please, if you ever want to chat with somebody who's suffered the same confusion please feel free to get in touch.

      Mike x

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    • Posted

      Hi Mike i have just replied on alices post if you want to read up

      Congrats on a long assesment and diagnosis best wishes to you catherine

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    • Posted

      Hi mike hows things with you ? nothing moves fast after diagnosis my son is still waiting for his 1st appointment after diagnosis but keeps getting told theres a backlog of work but i found out last week his aspergers nurse has gone of on long term sick 6 months ago and has not passed my sons paper work over to the team. Its realy not good enough and i am looking into it all

      Good luck to you x

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    • Posted

      Hey Catherine, I'm sorry to hear things are moving slow with your son. Things are great with me thanks, everything is looking up since my diagnosis.

      I'm sorry things aren't so easy regarding your son. I was failed through the lead up to my assessment,I am waiting for my follow up appointment,I'm. Not sure what it will Intail but anything you need to know I will happily pass on.

      Hope your well Catherine x

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