Hi everyone, I’m a newbie looking for space to rant!
My aspie son recently suffered a severe psychotic episode and was diagnosed with Bipolar and is now under the care of the Early intervention psychosis team. After 6 months of poor engagement from my son and them trying with different workers etc , he is nowhere nearer to receiving any intervention and I feel like I am right back at the beginning of getting the professionals to understand high functioning autism and his extra needs. I honestly feel exhausted as my son isn’t settled yet on his antipsychotics and still experiencing episodes , with managing this, his meds, his appts, his mood, his need for constant reassurance and then on top of that having to basically go back to the basics so this team take his autism into account and understand how this impacts on him too … I’m just running on empty. I could really do with some support but I feel like his workers hate me because I’m always having to remind them of his autism and fight for every service or bit of support.
Recently he was almost sectioned, 2 Dr’s recommended inpatient but the AMPH agreed to give him a last chance to engage in their community treatment. Which he did for one appt and now refusing to see them again.
Mostly I feel that all this effort required working with this team is not worth the benefits and we’d be better off discharging and trying a different approach but then I get scared and worry if there’s a crisis.
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Oh Theresa!
This is exactly what happened to a relative of mine over 10 years ago. Presses many buttons 
So sad that so many involved in mental health have NO understanding of ASD, still!!!
Their continual insistance in “engagement” gets my goat. They just do not understand that the more they try and push ASD to " engage" the more the person backs away. Grrrr 
In the end, my relative was sectioned involuntarily and forced to take medication. He hated the Unit, it was noisy, understaffed and the other inpatients were horrendous. However it had the effect of him realising he had to play the game to get out, he had to remain calm, he had to comply. Other advantages were that because he was involuntary when he was discharged his care is now covered under something called section 117, supposedly for life, but they are now trying to retract that (even though it is law 
) . It also meant they had to find him some where to live afterwards. He should have had more aftercare but that ceased fairly quickly as his supported housing placement was 100 miles away.
The family did a lot of supporting at this time, but were largely ignored by the mental health team. We did have to engage specialist solicitor for him to fight for discharge. (Google mental health solicitor and your area)
I did hope things would have changed in the last decade, but it appears not.
Have you contacted Autism UK , actually spoken to them?
Are you aware of the Rightful lives campaign, and Mark Nearys blogs, both of which are fighting for LD people not to be ‘imprisoned’. I see ASD as similarly misunderstood
I really don’t have much else to suggest, so sorry
(((((Big, big hugs))))
MrsA
Thanks mrs A for the reply…
Yes I’m afraid that even though mental health teams say they have experience of ASD, they don’t! The more he backs away the more assertive they are which in turn makes him back away! They are very defensive to any advice or suggestions I give, like coming once a week in the same day at the same time etc. They say he is trying to call the shots!
It’s hopeles , it was hard enough just getting support for his autism at school and it seems with a mental health issue on top we have no chance. I don’t want to give up on my boy but really don’t know what else to do. I asked for a carers assessment and they just ignored me. Sometimes I think the only way he will get and accept some support is if I wasn’t around…
Can he or you get a mental health advocate, its seems a very complex situation, far too often NHS staff concentrate on their field forgetting about all the other issues. Needs a holistic assessment to consider all issues.
And you should be getting a carers assessment, there is the Triangle of Care which Mental Health services should do-involving family with discussion about treatment/care.
There seems to be a lot of people claiming they know about Aspergers/autism when really they don’t have a clue.
Hi londonbound, where do you get a mental health advocate from and what do they do? A social worker from the EIP team did a care assessment some time ago but not heard anything. His care coordinator managed to see him last week and did a sensory assessment. We keep doing all these assessments and nothing happens!!! In fact that’s all we’be done is be assessed.
I’ve left a message for a carer support service called making spaces ? So hopefully can get a bit of support there.
He needs to be changed from this current antipsychotic he’s on to one they say has few side effects (why didn’t we get that in the first place?!) but any change to his dose seems to make his psychotic symptoms reappear which of course is traumatic for both of us. If we can’t get the medication right then how is he ever going to access the talking therapies etc and better manage bipolar symptoms.
We just seem to slip through all the gaps in support services… He’s not autistic “enough” for autism services but he’s “too” autistic for mainstream MH services. Meanwhile I have a very ill young man hiding away from life in his bedroom , not fulfilling all of his great potential and we go from crisis point to crisis point with very little input from services other than they could section him into a hospital with no autism specific input and increase his anxieties through the roof, thereby becoming more challenging and this being misunderstood and seen as MH behaviour. I can’t allow this to happen but dont know how to make the community team understand him more so he will engage with at least some support.
Sorry for droning on, you all deserve a medal!
Mental health advocate ?
Full sp from the MIND web site :
https://www.mind.org.uk/information-support/guides-to-support-and-services/advocacy/
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Advocacy in mental health.
Explains what advocacy is and how it can help you.
Gives information on different types of advocacy … including statutory advocates … what sort of situations an advocate can help you with … and how to find an advocate.
A whole site packed full of information run by the leading charity in this specialised field.
Sadly all too true!
Firstly you must have carers assessment under the Care Act 2014, it is your legal right. You can complain to the council (follow thier officail complaints process to the letter) , and if that doesn’t resolve it, you can then go to the Ombudsman
Secondly, even if he ends up in full ‘care’ you will still be needed to watch out for his rights, his health, his finance, his benefits and his placements. Our family is still fully, activley fighting for my relative. Don’t think things will be better if you walk away. Better to pick your battles, don’t sweat the small stuff, get informed, get supported (advocate, legal and friends/family) and look after yourself (physically, emotionally, mentally, financially).
If he is not doing much towards his own welfare, try backing off him somewhat. His mind will be working to very different timescale than yours is and he may be feeling too pressured. Still praise, and show interest, and then praise some more. Even things like “that t-shirt looks good on you” can work wonders. As he’s on meds even getting up will be a huge achievement for him, so say so
Xx
MrsA
Mind is a good start, I don’t know if you have one nearby, most areas have an advocacy scheme, this is free, in West Yorkshire it is Cloverleaf advocacy.
Has the Hospital/mental health services got a notice board/ leaflet stand anywhere should be places to give help and support.
PALS Patient advice liason service , all trusts have to have a PALS , try them.
You should be getting copys of any assessments and be able to challenge them if not happy.