UK Adult Autism Late Diagnosis Question

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Hi I appreciate this is a global community and wondered if "you" here at wrong planet have noticed something that is bothering me at present;

I have met with several local political persons (no names) as a typical constituent would and been very surprised by the lack of appointed parties or awareness of autism from an adult perspective. Many I met could not separate the "many things being done for children" and the lack of adult focussed services. I have been told autism has been "fixed" and all the children presently with autism are now "cured" and able persons in society.

Being in my 30's and only just diagnosed there appears to be very little I am being advised or supported in doing. I have tried to contact the NAS and found them to actually be as bad, if not worse with adult autism in my area, focusing primarily (if not solely) on child services, contacted council cabinet members (even when there isn't an autism scope within the cabinet) to little avail. The local council workers have been very rude, verbally abusive even intentionally malicious to me that I have come into contact with enough to stop me returning to them again.

Having lived a relatively successful career before diagnosis I see a lot of that being diminished even ignored by care-workers to the extent it has even been supposed I "should not" have done these things; career etc, because I was "autistic" and should have stayed at home waiting to die (not hyperbole, although once again paraphrased from an actual meeting). I'm at a loss how these people function in social services remit but seem to being pushed into obscurity after two years waiting for my diagnosis to be confirmed in the first place and now a year later without any help after that meeting.

I'm aware the wrong planet community can be very helpful in seeing problems are not singular but I am particularly interested in adults from the UK with a late in life diagnosis such as myself and how they found the organisations and institutions around them at the time of diagnosis. I'm really worried [almost convinced] adults with autism are being pressured into suicide, violence, even prison to avoid dealing with them whilst "curing" children!

Disclaimer: I do not believe autism can be "cured" [as many seem to state to me] nor do I believe anyone should take these peoples' advice! I am in many regards here reiterating what has been said to me not what I believe. Apologises if the poor grammar makes that hard to see.

Hello,
This does seem to be the general UK attitude to late adult diagnosis. If you have developed coping strategies/mechanisms and have the ability to live independently then there is no additional help available. Some health professionals believe that if you can satisfy the previous criteria then a diagnosis of ASD is not warranted in the first place. It highlights how AS really is a hidden issue for most people.

What type of issue are you looking for assistance for?
It does not seem that you have posted about this before so it's hard to know what specifically is bothering you.

Hi neilson_wheels thank you for the reply. My own situation may not be the common example of late diagnosis and the hastily worded post was more an external way of asking is my situation uncommon (if that makes sense) enough to push my mind to other things [hopefully].

I would like to know if others have heard feedback from their local providers / councils and their experience of the adult & late diagnosis worked out.

The wording of "cured" and the lack of separation or even basic awareness of adult autism seemed troubling at the time I heard / saw them and would like to see if others have heard similar feedback especially!

At present I'm just looking for wider input rather than help but thank you for asking.

I agree with you, from my own personal experience of the NHS, GPs and mental health professionals, and the NAS too.

I don't have any experience with the local council regarding AS, although I do deal with them through work and I'm far from impressed with the service provided.

I was interested in what issues you have approached the council for help with. Obviously it's your choice if you want to discuss that here or not.

I have just been diagnosed in my 20s at SLAM. I arrived to the referral through mental health services for anxiety/depression. I suspect this is a not uncommon route for adults. Subsequently the doctor is writing the report on actions to take e.g CBT which the secondary care and GP services will have to fight amongst themselves about who will do what. But yes there isn't a lot even tailored to autism, let alone adult specialists.

What you say generally about attitudes towards adult diagnosis in the UK pretty much confirms my experience, having been through the process recently myself. The NHS psychologist I was sent to was appalling. However, as I work with people on the spectrum I have access to some excellent professionals (they do exist), so hopefully I will get a second opinion.

What you say about social services' attitudes also rings a few bells, but I think it depends on where you live. Again, I've seen some who are very good as well as those who are distinctly unimpressive. But there are some highly dedicated support services for adults. So if you'd like to have a chat then by all means send me a pm, it would be nice to hear from you.

In my few dealings with the NAS I've been disappointed, and this is borne out by people I know. Their staff are mostly 'charity professionals' who could just as easily be working for Oxfam or the RNIB, and have little real knowledge of autism.

I was more concerned about the lack of "Quality Assurance" within the councils' frameworks with limited ownership of the services they provide or need to provide.

I was aware of the legislation [from NAS to their credit] but found that was not being incorporated to historically outsourced contracts such as the housing department, and more importantly social workers within the local MH services staff were behaving inappropriately. I even had some solutions to these problems, however I found my messages falling on deaf ears. I did manage to invite a representative to my home however after a short meeting it was declared I was not the "right" token autistic they wanted to meet; I think he wanted to meet a life long diagnosed autistic.

As of that I have been made aware of disparate parties within the council but I am apprehensive as I was made much worse from previously engaging with local service providers. Recently I have opted to not engage and accept my situation [short term] and avoid engaging, conceding the very limited life style that incurs.

Thanks for replying... I'm not aware of SLAM but that is good. I took a long time to get diagnosed and it was identified CBT wasn't an option for me but suggest someone try it for at least a short term ... worth quantifying the period of support you get. There are some courses but these are regionally biased but did see some service providers specialising since the 2009 & 2014 laws mandating some support around the UK.

Thanks for replying. It is useful to see the same patterns coming across here and appreciate adding your experience to the list.

That's excellent and hope the additional input helps! There seems to be a massive variation based on who diagnoses you and where you live presently, access to excellent professionals helps skip hurdles!


Yes this is definitely my read of this too!

What kind of help do you want?

Hello again,

I'm sorry but I still don't fully understand your position.

Are you attempting to advocate for autistic issues?

Have you been directly affected by a lack of service(s) that you believe you are entitled to?

OR both of the above?

At present I'm just looking for wider input rather than help but thank you for asking.

I felt I had identified several failings when I was going through the process of diagnosis and some of those have even been resolved now over time. I was trying to raise alarms to fix these but that did not happen.

The words "advocate" is hardly the right term, more trying to start a conversation [which wasn't an option] with those responsible for shaping autism related processes and initiatives to help towards adults more and dispel the notion autism will not exist very soon as everyone is being "cured" etc as noted above.

I'm probably fitting into both categories to varying degrees.

What kinds of help do most adults want?
It's usually been vague to me what most people mean by support and services, like what specifically those are, what types those could be.
If people could figure this out, then they could advocate for a few specific important ones, which would be a start.