New forum member

[Final]

Hi there folks,

 

I'm brand new to the forum (this is my first post) so i'm sorry if this post is in the wrong subforum / category.

 

I'm a 22 year-old guy, currently studying philosophy and cognitive science at university, and working at a residential care-home for severely autistic children.

 

What brought me to the forum:

 

Since starting work at the home, I have encountered aspergers in various ways. After learning a small amount about it, i realised that there were correlations between it and my behaviours since childhood. After realising this, i decided to research more deeply, reading various books from my employer's extensive autism library, as well as internet research and conversing with individuals diagnosed with AS. This has been over the course of the past year; this week, i went to my G.P. to ask for a referral for diagnosis myself.

 

I had my first assessment on thursday; I saw an occupational therapist. The session i attended was considered a 'screening' session. I'm not wholly certain about the motive behind that, but i assume it is to make sure that there aren't any other glaring underlying issues i might be having that need addressing first. I was worried once she had told me she was an occupational therapist; i have read various stories where O.T.s have turned people away due to their lack of knowledge about ASDs. Fortunately, the lady who dealt with me was very understanding, and also honest enough to admit that she had little understanding of aspergers. But she said that she could see how important the diagnosis was to me, and has now referred me to the specialist team that she works with.

 

The problem now: 7 month waiting list to see the specialists.

 

 

 

What was the harder part for you - getting the diagnosis itself, or getting the referral in the first place?

 

 

 

[Tally]

Hello, and welcome to the forum.

 

A kind of screening session is fairly normal. Assessing for AS is expensive, and they want to be sure your symptoms aren't explained by some other condition before spending the money on an assessment. It makes sense really, but can feel like another hurdle to cross.

 

A waiting list of 7 months isn't actually unusual. I hope that it does finally bring you some answers when you are finally seen!

 

For me, getting referred was my biggest problem. It was simply impossible and I ended up with no choice but to be seen privately.

[zenemu]

Good luck with the assessment

[justine1]

Welcome to the forum.It does sound like you are on the right path and quite lucky to have a referral many others dont even get that far.I am sure the wait will be hard possibly harder than the diagnosis.

 

My son has AS and actually I accepted the diagnosis straight away,even though I knew nothing of AS before his diagnosis,but once I did it was a relief to know I wasnt "imagining" or over exaggerating the difficulties he has.

 

I wish you luck either way

[cmuir]

Hi

 

Welcome to the forum.

 

I'm an NT adult with an AS son. I have to say that I found actually getting someone to listen to me in the first place was the hardest thing. I was told by my HV and son's nursery manager to cut down my hours at work (from full-time to part-time). I was livid. Really felt like I was being treated like a neurotic first-time mother who simply couldn't cope. I knew it was much more than than. In fact, my work was what actually kept me sane (and still does!). I had to persevere for a long time before eventually having the courage to demand a referral and convey how I felt they saw me in terms of my credibility. So that's was a massive hurdle. Once a referral was in the pipeline, I felt my son and I were passed from pillar to post with no one seemingly wanting to take responsibility and give any definite answers. Of course, it can be a long process since often a number of professionals can be involved. Also, no one wants to get a diagnosis wrong and so the waiting can be difficult. However, with some people it becomes very clear quickly and so the process is a much shorter one. For me, I really needed to know whether my son had AS or not and it became all-consuming. For me, it was about acceptance – and the hope that others would give him some understanding and tolerance. Particularly in children, I know that parents can often be seen to excuse bad behaviour because 'wee Johnny is autistic'. For me, it was never about excusing anything, but more about providing a reason for things.

 

Best wishes and hope you keep us posted.

 

Caroline.

[trekster]

Getting the referal, we had to wait 18months to see anyone about diagnosing me.