The older person on the spectrum and the downplaying of how they're doing

I had brief spells  of therapy with 2 trained psychologists. Both adopted a "If you want to be a good person" approach as though  I was a moral deviant , rather than trying to help me cope better with situations . They were kicked into touch rather quickly.

Finally an untrained worker at the local mental health centre  saw me to provide 'therapy' . She told me I lacked self confidence and self esteem . She then proceeded to go overboard in criticising me . After a while she let slip she was a member of small religious community. A few weeks later I produced  an in depth and open letter of my experiences. That inadvertently upset her religious sensibilities , and she pulled the plug on seeing me .

Yes, that need for advocacy is so under-recognised, and organisations who provide advocacy for those of us who don't have family or friends to support us are often the first to be chopped when funding dries up.

There is absolutely no way that I could have navigated the disability benefits system or won my appeals without the support of the advocate that I had at the time. Prior to having him, I have been in multiple situations where I've been on the verge of bankruptcy or homelessness because my difficulties with communication, especially by telephone, have made the process of getting help all but impossible. Likewise with social services.

There are many of us, I think, who are stuck in a catch-22 - the traits which we most need help with are precisely the same ones which mean that we can't make our case for needing help. It's not just that the application of the rules is biased against those of us with hidden disabilities; the mechanics of the process itself are biased against us. We just can't reach the first rung of the ladder.

In a few months time, my current PIP award, which took a two year long appeal to eventually win, will expire. The dread is building already, and all the more so because the advocacy organisation who helped me before no longer exists - a victim of local government cut-backs. I just know that without an advocate, there is no way I will be strong enough to go through that again. The fact that this will probably be interpreted as "not needing the help" makes me fume.

I feel that there's very much a "you've got a diagnosis already" trap that many autistic adults get stuck in. As soon as you have been labelled as having had a mental health problem, absolutely anything else that you present to front-line staff gets blamed on it - they just glance at your notes, see the previous diagnosis, and "bingo!" everything is explained away!

I still have some of the diaries that I was asked to keep for counsellors; some going back to my 20's. There are some in which you could almost tick off item-for-item all of the official autism diagnostic criteria. My story never varied; I was always consistent in describing what my problems were with all of the professionals that I saw over those decades. But no - all they had was a hammer, so all they wanted to see were nails!

Graham Slight Return said:

Imagine a white counsellor telling a 63 year old person of African heritage, that as a professional counsellor he knows more about the experience of racism.

Ooh - that is a wonderful metaphor, Graham; I might have to steal that one off you!

It reminds me very much of most of my experiences of CBT. Every time I tried to explain that talking about my emotions was something I found very difficult because I didn't comprehend them very well, they started digging for a reason for my supposed "aversion" to engaging with the counselling process. If I tried to describe the difficulties I had with my poor social awareness and being rejected and bullied, it was all supposed to just be "nagative thinking" because these things couldn't possibly be happening as much as I was reporting. And so on, ad infinitum (or ad nauseam!)

I did eventually, and completely by chance, end up seeing a counsellor who had worked with autistic people in some other capacity earlier in her career. The difference was incredible - she helped me with the issues which I'd always maintained that I wanted help with instead of trying to bash a square peg into a round hole!

It's really good that you are able to get support now, some areas are better than others. Your step daughter seems very helpful! I'm in North Essex so might be slightly different allocation of resources. We shall see!

I was in Southend .

It's really frustrating when people are so dismissive. They don't know how it feels to be you or what level of support you need. Easier said than done, but don't let them get to you. 

I'm in Essex! Maybe I shouldn't hold out too much hope then!

I wouldn't have got the support if I hadn't moved near my stepdaughter , and she hadn't advocated for me .  In Essex there was no support at all.  

I have diagnosed ASD (Aspergers) and ABI (Acquired Brain Injury). People seem to have a real difficulty accepting that people have impairments and need help due to disability. I've had it for years with the Brain Injury. People either:

Dismiss - 'oh but you're not THAT bad are you!'

Normalise - 'oh yeah I do that all the time too!' (really?)

Invalidate - 'that's not an excuse!' (no, it's a reason!)

Incidentally I don't get any support but I am looking into it.

So true Kitsune   . With me - there's diagnosed, Asperger's and schizophrenia .Probable but not diagnosed - Dyspraxia and learning difficulty.

here here

This is really bad of people to be so dismissive! I have a number of family members in their 70's who don't get any support, because they don't need it, in fact my mother-in-law still works full time as a support worker. IF someone is getting support then it is for a reason, such as disability. There seems to be a reluctance of people to accept that someone actually has a disability though!

I’m glad to hear that things are better for you now.

I can’t help thinking that if the Government continues to introduce free market ideology to the NHS, there should at least be the possibility of suing for breach of contract. Accountability would introduce a sea change to the world of psychology.

If one had a problem with one’s heart or kidney, for example, tests and scans would be performed. Appropriate investigation would precede diagnosis. In psychology you have a conversation, upon which the psychologist bases his diagnosis. The theory deployed during diagnosis may well be wrong. In the case of autism, I suspect it is wrong.

I am aware that there are no scientific means of diagnosing most neurodiverse conditions. At the very least the conversation should be ongoing. In my opinion, lifespan support strategies should be employed.

someone about to commit suicide or murder could be able to speak fluently and coherently   --- Its hardly a good assessment. Its a very off hand / cant be bothered attitude.

I'm getting better support and treatment here thanks to my stepdaughter. Will now have yearly checks re the care act. Something that should have happened when I lived in Essex,but didn't . I think getting compensation for poor treatment from a mental health trust is harder than getting blood from a stone .

That is shocking. I suppose there has been no mention of compensation. It probably doesn’t even occur to them.

How are you being treated now?

It took 45 years as a psychiatric patient for anyone in the mental health profession to realise there was more going on than just mental illness . 

Yes, I agree.

After a ten minute conversation, these ‘professionals’ ignore my 63 years of lived experience and decree ‘no help necessary.’

Imagine a white counsellor telling a 63 year old person of African heritage, that as a professional counsellor he knows more about the experience of racism.

The attitude of the psychology and psychiatry professions towards autistic individuals would make a 19th century anthropologist squirm with embarrassment.

Yes, there does appear to be very limited understanding in the UK amongst people who are usually termed professionals. I'm inclined to see it as very much part-&-parcel of the global populist dumbing-down project.

I'm also 63, and diagnosed two years ago. And the populist thing to do where I live is to sweep the whole adulthood ASD thing under the carpet as if it doesn't actually exist at all. It's still OK to talk about young people on the spectrum, though. But even there, I would say that the public are really more interested in the cute or heartbreaking stuff. And then when the cutesy stuff starts to disappear in adolescence, the disappearing act kicks in. I have yet to meet another adult autistic here. Where they all go, I haven't the faintest idea, as yet! I sort of imagine that by that time, they have been thoroughly 'conditioned' enough to be in complete denial of their previous diagnosis. They might realise that they are never going to receive any support in adulthood, and so the best thing for them to do is forget the diagnosis ever happened. And hush the whole thing up for the rest of their lives.

This location really does have a desperate need for people who can work outside the box, for instance. But I imagine you only really pass muster for a career like that here if your folks have the right connections, and can thus afford to conveniently ignore any thought of outside support.

In my case, I now seem resolved to battle on through with this diagnosis; alone if necessary. I find that almost gives me a new purpose in life.

I am far better verbally than non-verbally. A lot of people including MH professionals don't look beyond that when it comes to how well you're seen to be doing .