ASD, mental health and criminal justice

For issues specific to autism / Asperger Syndrome.
I have been caring for a friend with ASD for a number of years now. She recently went through a dreadful time and due to psychiatric services not understanding autism she’s actually ended up in prison.
It’s been so very distressing for her obviously but myself too.
She was suicidal and making attempts but was admitted and discharged 3 times despite not being safe. Eventually after being discharged (even after trying to hang herself the previous night!) she got herself arrested and charged with an offence and was sentenced to 10 weeks in prison.
It all started because her psychiatrist reduced anti psychotic medication in the midst of a crisis and she relapsed on drink. She has been experiencing melt downs but people around her do not see this behaviour as due to autism but have decided it’s EUPD. So she was excluded from a Wellbeing centre for 4 out of 7 days pw and this threw her into a deeper crisis. To add insult to injury she was then told her son had attempted suicide (over the phone by his sw!) My friend completely flipped and became suicidal. She self harmed and took an od.
The way she’s been treated has been barbaric! The CMHRS Home Treatment Team were awful to her. Her psychiatrist is completely out of touch with what might throw her into a meltdown cycle and increase her anxiety. I’ve made a formal complaint via the Patient Liaison Service as all the services who failed her are from the same NHS trust.
When my friend is released she’ll stay with myself and my family. Her Social Worker is useless and will not speak to me at all. She’s not referred my friend for any support for her autism despite services that are available. I asked and she’s done nothing. They’ve all decided that despite a formal diagnosis of ASD that she has EUPD and they’ve ignored her autism.
It’s such a mess and I’ve not known where to start. I feel like no one really understands and just say things like I have to put myself and my family first and that my friend needs to learn to be independent. Cause that’s worked hasn’t it!!!!! Of course she is an adult with her own mind but the support from local services has not helped her as it’s mental health focused and ASD is not a psychiatric condition.
Does anyone else understand or have similar issues?
Hi Cloud, sorry to hear about your friend's problem. I am having problems with my LA for my brain damaged son, but they pale into insignificance in relation to your friend. If the LA are not doing what they are supposed to do, she may be entitled to Legal Aid.
Hello Cloud
That does all sound a dsitressing situation and it sounds like you were right to raise an official complaint. You are also right that many mental health staff seem to have little or no understanding of ASD.
I have a relative with ASD and when he was under a lot of stress from being in (what proved to be) an unsuitable supported living situation he reacted in such a way that he was arrested and then sectioned and put on antipsychotics. It took a lot of family intervention and complaints to get him released and then to find a more suitable living situation, there was another unsuitable placement in the middle too. So yes I can empathise with your friends situation.
We only managed this by spreading the load over several family members. As one got burnt out, the the next would step forward
I know too this happens all too frequently to others too. Google Mark Neary and follow his blogs on his fights to get his learning disabled son suitable care. He also follows and links to others fighting for appropriate care for LSD,ASD and mental health issues too. It may help you feel not so alone and picked upon.

There is one thing in your account that raises alarm bells and that's mention of her drinking. Alcohol is strongly contraindicated when taking antipsychotics, and is generally not all helpful for anyone with either ASD or mental health issues. Over time it damages brain cells and causes what presents as mental ill health. So it might well be that your friend's diagnoses may have to change. It is possible to have ASD and alcohol related brain damage and mental health issues too. Having one doesn't mean she doesn't have one or both the others too.

In such complex cases it is going to be a very long haul and you need to make sure that you are looking after yourself mentally and physically to be able to continue to provide support. That means taking some time out, exercising, eating healthily and making sure you have support and perhaps counselling too. It also means putting boundaries in place to ensure it doesn't take over your entire life.

I very nearly got sucked under trying to help a friend who had mental health issues and alcoholism. It was very painful and she ended up turning on me. I, for one, am not going to risk that again so do check and be sure she wants the level of involvement you are putting in.

Hope this helps a little
Thank you for your replies and support. Her drinking is not a massive problem as it’s only after meds have been reduced and she’s usually then managed to get meds increased due to the relapse, so the drinking stops. I’m an addiction specialist so I’m very aware of what can happen; her drinking is a short period of bingeing and then it stops. And it’s not huge amounts in units either.

The lack of understanding about ASD is completely mind blowing and it’s almost like you’re being laughed at by the GPS, psychiatrists and CMHRs staff. They are so very arrogant and they believe she has EUPD and that she’s a little bit autistic!!!!! How stupid they are as no one can be a little bit autistic- she’s just on part of the autistic spectrum that indicates she’s high functioning etc.
What really concerns me is the lack of care in reducing medication- reductions that go against NICE guidelines! They don’t seem to believe that these reductions have or can have a devastating effect on people. My own mother was reduced from psychiatric meds so quickly that she had withdrawal fits! That was 18 years ago. I took that to the GMC and I did actually get an apology and acceptance that she’d been withdrawn too quickly.
If you are on the Autistic spectrum and the medication you are on helps you feel less anxious it figures SURELY that if it’s reduced too quickly that you will experience anxiety!
Extreme anxiety can lead to psychosis. That’s what is happening AGAIN in the prison- the prison doctor has reduced by a third the Pregabalin she’s on and she’s experiencing hallucinations and is very distressed. He is refusing to return my calls. I’ve had to write to the prison Healthcare dept to explain that the CMHRs said her Pregabalin should not be reduced and yet the prison have decided to.
It’s been negligence ALL the way through the whole system. I wish they’d never prescribed her - the same team now treating her like crap.
I’m getting support from my church and friends. I’m eating well and going walking on Saturday in Wales. I’ve also got a family break booked for Easter.
Thank you 😊