Undiagnosed & Fed Up Waiting

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gothicsmurf
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Undiagnosed & Fed Up Waiting

Post by gothicsmurf »

Hi, my name is Chris.

I am currently seeking a diagnosis to explain difficulties I have had my whole life, mainly social and emotional difficulties I have now.

Since going to my GP 18 months ago, I have had 2 appointments with a psychiatrist. Both times I was referred to have an Autism assessment, despite the 1st test (screener) coming back negative. I felt forced into researching things myself, as I don't feel the psychiatrist knows what to look into. ](*,)

When I was a baby, the doctors thought I had a build-up of fluid around the brain, although this was never formally diagnosed. A lot of the problems I had are similar to the symptoms of brain injuries caused by Hydrocephalus. Similarly, they also match with Dyspraxia. Dyspraxia is the only one of the two in which I have seen "hand flapping/clapping when excited" mentioned, something I have done since about 2 years old, and still do to this day (I have learned to control it in public :D) (I'll cover this in another post).

I was behind in most of my development milestones, although I'm not sure my gross motor skills were too affected - sat up alone at 6 months, crawling at 9 months, walking at 18 months (I toe-walked for the first few months). My fine motor skills were quite far behind - Built a 3-block tower at 3 Years Old, used cutlery at 4-5 Years Old, dressed self at 7-8 Years Old, and learned to tie shoelaces at 11 Years Old. I said my first words at about 18 months old, and started putting words together into sentences at about 2 Years Old. I had poor handwriting in school, lacked concentration/easily distracted, rarely finished work on time and had behavioural issues and was prone to tantrums and lashing out at other kids.

In response to hobbies, I like watching football, watching and playing pool and snooker, playing computer games and listening to rock/metal music (Metallica, Iron Maiden, Guns n Roses, Red Hot Chili Peppers, Blink-182 ....to name just a few) :D
pouvik
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Re: Undiagnosed & Fed Up Waiting

Post by pouvik »

Welcome, sounds alot like what I had as a kid, I had been fighting for 20 odd years to get diagnosis ( parents helped first 20 and myself mostly for the odd), psychiatrist wont be able to help you need an OT assessment specially if you are in the UK.

Also nice list of music, but blink182 really thats a band for 13 yr olds and those that dont understand the genre :P
gothicsmurf
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Re: Undiagnosed & Fed Up Waiting

Post by gothicsmurf »

Thanks for your reply.

I don't bother too much with genres. If it's loud and catchy enough with good guitar solos I'll listen to it :lol:

Interesting that you say I need an OT for a diagnosis. I seen an OT monthly for about 3 years from the age of 2 Years Old, to help bring on my development. My mum can't recall anything mentioned about developmental conditions. In my pre-school report, the OT suggested that I had problems in infancy, but had overcome them (her exact words were "He is a normal, healthy boy now"), and that I should be capable of attending school without the need for extra support.

I will be asking my psychiatrist to refer me to someone to look into neurological/developmental disorders, and I will mention my research into Hydrocephalus/Acquired Brain Injury and Dyspraxia.

Just out of interest, can Dyspraxia be diagnosed retrosectively, in absence of motor skill deficits? I ask this because, although I had fine motor skills problems as a kid, I don't really have any now. If I was pushed I would say difficulty learning guitar & finding my way around the guitar fret board, and threading needles.
Tom fod
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Re: Undiagnosed & Fed Up Waiting

Post by Tom fod »

Hi Chris

Welcome to the forums. Unfortunately getting a diagnosis is by no means straightforward and I guess the fact that you've been referred to a psychiatrist seems to suggest they're trying to tackle the emotional stuff rather that the root cause. (CAUTION I'm no expert). Getting formal diagnosis via the NHS is sadly no simple or quick matter. I'm guessing the experts you saw when you were younger did not consider dyspraxia in your case. By all accounts it's not easy thing to diagnose and there's a wide spectrum of difficulties. I was/am visually impaired so most of my Special Educational Need statement was about that. I've only really learnt there was a name for my other troubles/difficulties in the last couple of years.

Equally when you have a diagnosis other than having the assessment report to say you are affected it still doesn't seem to open that many doors as far as people offering help. Hopefully that is improving though it is sadly still all too slow.

We accept you here, formal diagnosis or otherwise 8-)

I'm into Metal too but have some guilty pleasures as far as some songs go too. Metallica sold out too much for my liking but there are songs I like. I prefer Slayer, Megadeth.Maiden, Motorhead and a bit of punk too It's worth checking out Brian Posehn on YouTube, specifically his videos Metal by Numbers and More Metal than you if you've not seen them.
Tom
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
gothicsmurf
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Re: Undiagnosed & Fed Up Waiting

Post by gothicsmurf »

Hi Tom,

Thanks for your reply. It was very helpful.

I think one of the main reasons I was referred to a psychiatrist was when I went to my GP I was more concerned about what was written in a psychology report I had done 6 months earlier. The psychologist suggested I was showing traits of Avoidant Personality Disorder. That was a bit of a dead end, but he decided to send me for an Autism assessment because of my apparent social and emotional issues.

I am waiting for the psychiatrist to get back to me following the Autism assessment (which came back negative). Hopefully then I can try to get sent in the right direction. Failing that I will start over again, with the new information I have, and go back to my GP.
Tim G
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Re: Undiagnosed & Fed Up Waiting

Post by Tim G »

Hi Chris - welcome to the forum

I am a bit surprised that the autism assignment came up negative / completely negative - yes its not surprising that your not autistic. It may say that there are aspergic trates or aspects that are dyspraxic from that you can then say that really what is needed is a assessment for dyspraxicia because of what the first test revealed.
This could be one way to try and get a assessment on the NHS (which is not easy) yes you could go down the private route but this involves cost however doctors tend to pay more attention to things when there is already a formal diagnosis there.

As you kind of pointed out about having ok fine and gross motor skills this may be a hindrance in getting a diagnosis. It does not mean your not dyspraxic or are 'cured' but its more that the dyspraxicia can be masked by your own copeing stragities learnt over the years (knowingly or not).
The real Mr Potato Head
Tim G
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Re: Undiagnosed & Fed Up Waiting

Post by Tim G »

Hi Chris - welcome to the forum

I am a bit surprised that the autism assignment came up negative / completely negative - yes its not surprising that your not autistic. It may say that there are aspergic trates or aspects that are dyspraxic from that you can then say that really what is needed is a assessment for dyspraxicia because of what the first test revealed.
This could be one way to try and get a assessment on the NHS (which is not easy) yes you could go down the private route but this involves cost however doctors tend to pay more attention to things when there is already a formal diagnosis there.

As you kind of pointed out about having ok fine and gross motor skills this may be a hindrance in getting a diagnosis. It does not mean your not dyspraxic or are 'cured' but its more that the dyspraxicia can be masked by your own copeing stragities learnt over the years (knowingly or not).
The real Mr Potato Head
gothicsmurf
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Re: Undiagnosed & Fed Up Waiting

Post by gothicsmurf »

Hi Tim,

Thanks for your reply.

When I done the screener assessment, they did say that they were looking at Aspergers because of my motor skill and social difficulties.

The main reason the Autism/Aspergers assessment came back as negative was because I wasn't showing any history of the behavioural aspects of ASD's, particularly routines and being upset by change. Although, they did admit that the psychiatrist who referred me may well have done so because he was picking up on the social traits of Aspergers.

I have been wondering about ,if I have dyspraxia, whether it was a mild form and even if children can "outgrow" the condition. I believe in the old saying "practice makes perfect" and I was forever practicing tasks I was struggling with because I was sick of feeling like I was missing out compared to my peers and I was also sick of being bullied for my poor co-ordination & motor skills.
Tim G
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Re: Undiagnosed & Fed Up Waiting

Post by Tim G »

I don't think dyspraxicia can be outgrown, yes it can be overcome to a certain extent as we use coping strategies even if we know it or not. This can mask some affects of dyspraxicia but it does not mean your not dyspraxic its just a lot better dealt with. - I don't want to make it sound like a negative it is a real positive espshaly as you have overcome them yourself so well done =D>
The real Mr Potato Head
Moot
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Re: Undiagnosed & Fed Up Waiting

Post by Moot »

Welcome to the forum, Chris! :D
Hopefully not making too many moot points... heh... *ahem* :D
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