Post-diagnosis, my therapy has been cancelled....

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A few months after my diagnosis with autism, my therapy for anxiety and depression was cancelled.

OK, not so much cancelled as discontinued: the psyhotherapy service of our local National Health Service trust went through one of the hostile reorganisations we get these days. My therapist was re-allocated, and all patients were discharged, requiring a re-referal to get a new therapist.


My doctor seem very reluctant to re-refer me. I'm trying to understand why. Maybe he thinks that since autism is the "real" problem, the anxiety and depression WEREN'T real problems. Maybe he thinks it's not cost-effective since now he knows I'll never be discharged as "cured". (True, a hefty proportion of "regular" anxiety and depression patients are never permenantly cured, but the profession is still carefully ignoring that fact.)

Thing is, this therapist was very, very good for me. He gave me the help I needed to start living something approaching a normal life, and his ongoing advice stopped me from sliding back when things got tough this time last year. Since my final appointment, I've gone into freefall. I'm having a difficult time generally, and I'm adjusting poorly to my autism diagnosis. Many aspects of my life are starting to slide out of control. I do have some ability to help myself, but not enough. I feel like I've been dropped at the worst possible moment.

Has anyone else here had this problem? What arguements are there to overcome this attitude in my doctor?

That doctor is violating your rights. Basically, what you are describing is a clear cut case of discrimination against a person with a disability. I don't know what the law's names are in the UK. But I know they are similar or stricter than here in the US.

My advice: research which laws they violated you by discriminating against you for your disability. Then write a letter to them, explaining what happened and requesting that they change their mind. If that doesn't work, a threatening letter from a lawyer should do it. I'm not suggesting you sue. I'm suggesting that looking like you might sue will likely get you a quick response.

I'd just tell your doctor what you told us. Don't try to second-guess what's in your doctor's mind. Make sure you explain that you still have depression and anxiety, and you are starting to see yourself doing poorly.

I wouldn't try faking him or her out with legalistic threats, unless you are not getting anywhere with the straightforward approach.

Wish I could get therapy supplied, my gp basically said there's nothing that would be useful to me available since six weeks of cbt would do nothing for me, I used to have weekly sessions with a wonderful volunteer who taught me so much about myself, would love to have the opportunity of delving into therapy again.

EXCUSE ME!?! I'm not angry with you, Dancing. I'm angry at what seems to be a developing pattern in the UK of doctors denying basic care to people on the grounds that they are autistic and therefore there is nothing to be done.

OF COURSE, you could benefit from 6 weeks of CBT. (Assuming these concepts are new to you. I've heard it all before so it wouldn't do much for me.) 6 weeks isn't really enough to provide care to a Autistic person experiencing depression, but its a start. Its better than nothing and its certainly better than working with a unlicensed volunteer.

This has got to stop. First off, I would advise you the same way I advised the OP. First is a letter explaining that you feel their has been a mistake based on a mis-understanding, second is to get a lawyer to write a letter. They have discriminated against you, based on your disability status. This is criminal. It needs to stop.

All you UK people, if this is a pattern, and not just a few bad apples, its time to contact your national autism advocacy group and let them know this is happening. It is BAD NEWS for all of us. The US is likely not far behind if this stuff is going on in the UK.

Stand up, not just for yourself, but for all of the kids who are growing up behind you. We can't let autism be an excuse to not provide treatment.

I don't want to veer too far off topic, but for decades, I have been hearing that mental health treatment in general is abysmally poor in the UK. It isn't just autism-related needs, it's everything - anxiety disorders, depression, etc. I am quite satisfied, and accustomed to, the level of mental health care most people in the US can access. I just don't understand why the UK refuses to acknowledge mental health needs as legitimate health needs.

I've been in that system for nearly 3 decades and can attest to that

When I was diagnosed I was given a leaflet that contained a few online addresses, like the National Autistic Society, and two phone numbers for local groups. One of those groups turned out to be for the parents of autistic children, the other group no longer existed, having folded over two years ago. I live in Merseyside and there are essentially no adult autistic services in the entire county. That's pretty typical of adult autism resources in the UK, all their efforts are concentrated on children. I guess they assume if you've reached adulthood without their help then you don't need it, or if you already had help as a child now that you're an adult you no longer need it. Either way as an adult you're essentially on your own.

There is a private organization in Connecticut that helps adults get jobs--they get government grants by arguing that it is cheaper in the long run to get them jobs than to have them on the disability rolls. They are located in a very wealthy part of the country, nicknamed the "Gold Coast." I'm sure their location makes it easier for them to get donations.

https://en.wikipedia.org/wiki/Gold_Coast_(Connecticut)

It didn't take long for them to realize that they needed provide more than just job skills--people participating in their program are required to socialize during lunch time--they can't eat lunch all alone. The workers do everything, take phone orders, maintain the web site, harvest and process roses, even put together the coat rack and drive the delivery truck.

I hear you. Autistic people should at least be able to access the same poor quality of care that their NT neighbors are able to access.

I only have time for one crusade.

This exact problem is happening in the US. New Jersey has some of the best child services in the world. And some of the worst services for adults. Basically, you rot unless you parents die. Then you get put on the emergency list and you usually get into a group home. And once you are in a group home, you usually get day services. But nada until you are an orphan with no recourse.

And if you are able to be more independent and don't need a group home, there is basically nothing at all for you, no matter how many people die. (Although, I have heard of a success story or two about getting employment help from the office of rehabilitation. So, to be fair, it might be changing for the better.)

Unfortunately it is very poor, at least from my experience. In my county things have to get really bad for you before you get any 'help', and that 'help' is a stay in a god-awful psychiatric unit. Preventative care, or care with a view to helping people manage mental illness rather than collapse from it, is something I've seen repeatedly denied people (myself included). It doesn't help that many GPs outright dismiss mental illness, presumably with a view to cost-cutting or (as is the case with my GP) through arrogance and wilful ignorance.

One very bad breakdown I had, when I was suicidal, literally nobody would help me. No medical professionals, no charities; every local service turned me away. Mental health care in the UK is bloody awful.

yep , unfortunately feeling suicidal is not enough

It was pretty surreal at the time lol, what do they want you to do, come back when you've actually killed yourself?!

In all seriousness though that exact thing happened not so long ago at the hospital here. Young guy went in asking for help, they turned him away, and he walked right onto the adjacent railway tracks to his death. That's some top healthcare right there!

I think I heard about that I think they must think if your ask for help about being suicidal it can't be that bad and your not going to attempt it. Sometimes it takes a lot of courage to ask for help when your suicidal and it might be the only time you ask. If you have no support ( family etc ) your screwed. Last time I felt suicidal I threatened doctors that if they didn't help me I would hang myself from the hospital building with a sign saying how I was failed. Needless to say they gave me new meds and sent me packing ( If my GF hadn't been with me , I would of gone straight to the roof.

I always thought it was kind of a strange concept - wanting to kill yourself and asking for help. Totally valid, just strange you know, how the mind can work against itself like that. From what I've seen of crises like this, the hospital just kind of hopes you have at least one person who cares about you (or feels obligated to care), so that they can fob you off onto them. This was certainly the case with my brother; they just wanted me to take him off their hands, when really he needed professional help... Actually at the time the doctor assumed we were twins, so in effect he thought it was OK to let a '17' year old handle a sibling in the midst of self-harm/delirium rather than a medical professional. Needless to say it wasn't. Your case sounds similar, I'm glad your girlfriend was there for you, but it would have been nice for the doctors to have been too !