Autism in Adults (Not Aspergers)

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My post-diagnostic support was the specialist not bothering to dial in on my pdoc appointment as promised, being told to pay for a self-help book and being asked to engage a charity for adults with Autism that has a waiting list so long, they won’t even put me on it.

Now I don't see the point of this diagnosis, unless someone has any idea on what use it has?

The only reason I did the assessment was under the advice of s psychologist who has decided now she cannot help me.

I have tried watching YouTube videos to find out more, but I find the hosts irritating.

The book is in the bin now.

Can anyone explain to me, or direct me to any resources?

They sent me a word doc over email, and it had forums on there, so I had a look and both hadn't seen posts for like 5 years!

I just find this very confusing, and I am not particularly happy to have another Dx attached to my name

Do you have any areas in particular that you want more information on? Or any questions you would like answers to?

Your assessment report should have a risk assessment and recommendations / actions. These are the areas where you are likely to need support.

Support for ASD appears to be thin on the ground in the UK , it appears to be a postcode lottery. You need to live in a borough that has support.

There was no support available to me in my last borough except for mental health issues.
My new borough has an autism support service but I have yet to use it due to Covid.

Have you searched online for an autism service in your area ?

If this is through the NHS you're in for a fun time. I had to go private otherwise I was gonna be on a waiting list for over a year. And if you even live anywhere close to the north they tell you your appointment is in Sheffield of all places because that's the NHS main hub for autism.

It's about a grand or so for a diagnosis so it's not too bad, about a months wage. I paid a bit over though.

"The private route often involves the person referring themselves to the diagnostic service. The cost of an assessment range from approximately £200 to over £1,000. The National Autistic Society has details of professionals all over the UK who have autism expertise."

You get seen straight away and get to go to a posh hospital though so it's not all bad.

I think my diagnosis of Schizophrenia and Autism is a bit of a long shot. I don't trust either diagnosis to be honest.

This is what needs unpicking, but in the UK where I live the NHS seems less than interested in even considering this.

What I need information on is how these two conditions work together, as I am battling negative symptoms of schizophrenia, whilst being autistic - or so I am told.

One of my recovery goals is to be more social, but I feel defective and unable to achieve this

Being so isolated from my community sucks. I have no advocates other than my parents

I have messaged a few counselling services, but I am waiting to find out if they have Autism specialists or not

The waiting list here is 2 years. I got seen in 4 months as I am already in the system.

What did the diagnosis do to help you, and what did you do to achieve better understanding?

Oh okay I understand. I don't know much about schizophrenia, but I've read it's not uncommon for it to appear in tandem with autism. There's a board here that discusses other conditions such as schizophrenia that you may find helpful. One member posted this video in one of the threads there that could be beneficial:



Feel free to ask any questions about autism traits too and share your experiences.

There are a-lot more people ho are both schizophrenic and autistic than you might think. I dn't know exactly what you classify as not aspergers so that might limit it a bit.
It's not that uncommon of a comorbid. I'm sure if you'd search it you could find something on it. There might even be communities for people on both the autistic spectrum and the schizophrenic spectrum.

As already stated , Adult autism support in the UK is very patchy (if anything at all)
the best way to find out what/if anything is available is to contact your local CCG (clinical commissioning group) and ask them.

i have a HFA diagnosis (which i got at 45 ) after spending 20 years under the mental health umbrella due to the problems i have , i had to force my local CCG to speed up a diagnosis by pointing out the NICE guidelines to them - the NICE guidelines say that 'anyone suspected of having an autism disorder' should be seen by a specialist within 3 months - the NHS are supposed to use and follow NICE guidelines and i pointed this out to them ( i also had the support of a couple of mental health professionals who were as confused about the system as i was - they also questioned the system via the CCG ).

AFAIK in the UK for the last few years most professionals (NHS ) are not giving an asperger diagnosis anymore- they are using/giving the HFA diagnosis instead.

most support for people with an autism diagnosis is the same as for people without - there seems to be a very small amount of professionals out there that also specialise in autism - as already stated though you can find private services.

Fingers crossed for you

To be honest not a lot, I don't even tell people I'm autistic, especially not employers.

Like yeah I'm diagnosed with it but I never really used it for anything because there isn't any need. I mean I guess if I ever ended up jobless I could go on disability or sickness benefit I think? I dunno what they even are now but I think that's the only good it's done for me really.

Like I'm unsure as to why I went through it now because it was many years ago. I don't get any benefit out of the diagnosis other than when people say you don't look autistic then tell them I'm officially diagnosed.

I already understood everything they could possibly tell me even before the diagnosis because of the internet.

I'm kinda just thinking why did I even bother really? You just learn how to get better at social ability yourself anyway because therapists/psychologists can only do so much.