DB, 26, Downs Syndrome and poss ASD is probably psychotic. help.

[Immymaystealyourpug]

I'm copying and posting from the thread i made in special needs chat this morning, but will add an update on the end. this will be long, but i really hope someone can help.

Hello. I have posted on MN under different nn's but not about my DB although I often lurk here. I'm on my iPhone so sorry for any typos.

my DB is 26 and has Downs Syndrome. He is possibly being sectioned with what they think may be delusional disorder & psychosis. He believes he is in love with Jessie J ( pop star ). He says if she can't be his girlfriend he doesn't want to be alive.

A few weeks ago he expressed suicidal ideation & so he saw a psychiatrist as an emergency. He then, about a fortnight later, made to jump over a high railing. Thinking Jessie J would save him. He was caught by his bag strap by his 1:1 support working. The night before last, about a week from the second incident, he wrote a love song to JJ in which he mentioned taking a knife to his stomach. He then went to the kitchen and put a steak knife to his stomach. He put the knife down when asked to by a support worker.

They called a POVA yesterday. ( protection of vulnerable adults ). With a psychiatrist a social worker, a psychologist, support workers and us. They wanted to section him to asses. They think it could be delusional disorder but they are also
going to asses for Aspergers as he has many many traits.

the psychiatrist doesn't know what's going on with him. Which she readily admits & that's why we are so worried. He has always ( since about 5 ) beloved films/music to be real and that they can communicate with him. He is obsessive ( incredibly ) about certain films and bands and always has been. He has always been very impulsive. He is very articulate but does not always have the comprehension - we think he repeats lines from films a lot of the time.

he knows he has downs and hates it. He doesn't want to have an LD. He doesn't like mixing with others with LDs and wants a girlfriend. He gets so lonely and incredibly distressed. He is very jealous of my, my sister and my other brothers long term relationships.

sometimes he 'sees' things that have not happened but he is adamant they have. Recently DB and I were in Asda. He said a woman 'flashed her breasts' at him. She didn't. I was there & I was looking at the woman he was looking at. He was adamant it happened. DB does not lie - unless lying about food ( a side issue - we are holding a competency meeting atm as he his type 1 diabetes which is v badly controlled as he does not stick to his diet. We are trying to see if he understand the consequences. He is already going to, in all probability, loose a limb in the future due to advanced nerve damage in his foot).

we do not want him in the local psych ward. I have been admitted there myself & it is not a particularly good one. There is a specialist LD unit near us ( n. Wales ) but they do not usually take those in mh crisis.

it is my birthday tomorrow. DB and I are going to a gig. Which he loves. He would not understand hospital. We and the psychologist and the social worker don't feel it would be the right place for him and would make behaviours worse but the psychiatrist is pushing for a section. He would not agree to go informally. He doesn't want the anti psychotic medication he has been offered.

finally - he lives in a shared house with 24 hour support with 52 1:1 hours per week. As they can't do 247 1:1 care they may not have him back whilst he poses a risk to self. If he is not hospitalised I may have to look after him at home as my parents jobs are not flexible - mine is for a few weeks at least.

I work in MH and have a lot of personal MH experience but I do not know much about MH in LDs. I have always been v close with my DB and been v involved in his care. I'm getting as many books as I can & my colleagues are trying to help me find information.

I was wondering if anyone has any experience or wisdom in this area. I'm so scared for him. I just want him to be happy. I'm sorry if I have missed any details. & that this is so very long! Ill update later as he has a meeting with all the drs again today. Ill defo be back online tonight.

We have had the meeting mentioned above & they want him to go to the specialist unit, which does not usually happy to take people in a mh crisis, but are making an expection. He has agreed to go informally, because they have a drum kit, but we have been told they may section him once he gets there as he has a habit of running away.

They wanted to put him in the local general mh unit until they could get a bed, which should be tuesday. We said no. We have brought him home & he will have 2:1 support at all times. the psychiatrist agreed somewhat unwillingly, we have to duty SW'ers calling 3x per day and once at night. He made some comments tonight about staying under water in the bath and referred to his 'deep sadness'. If any of this escalates we will of course take him to the general ward, but if this can be avoided it would be less distressing for him.

I'm awake now till 3 am, then DF is taking over. sleeping in shifts till tuesday! He asked me to sing him to sleep becuase he was 'down, depressed and lost' (his words) so i read him childrens poems until he fell asleep.

This is so long, i'm sorry. Any experiences of psychosis would help. He told the Dr today he hears his 'friends' in his head all the time, and asks them what to do when people ask him questions. How could we have missed this?!!! We thought it was a slightly worrying imagination, not psychosis. I feel we have failed him.

Hello. What a difficult time for you, your db and your family.
We went through a very similar situation a few years ago with my SIL, who also has DS and possible ASD (I think, because she is more complex than the other people with DS that I know, and we have several children in the family who are on the spectrum incl dd2 so I recognise some traits). She had a breakdown after her behaviour became increasingly dangerous, erratic and delusional; it was hard to see because she had always been a little bit like that anyway - it was hard to know what was 'normal' behaviour, for example she had always been fond of making up stories, we didn't realise she had started believing them and was living in a fantasy world - and we all felt awful letting it get as bad as it did without realising she needed help.
She had to be hospitalised and heavily medicated for a few months :( It was actually so hard to get her treatment, no one wanted to take responsibility for her care, the different areas of our crappy healthcare system tried to pass the buck... My other SIL had to threaten legal action to get her appropriate medical care. It then took a while for her psychiatrist to find a combination of medication that helped SIL.
Anyway, she is back at home with my MIL now, still on some medication (much less though, much more alert, able to make jokes again etc) but for the most part recovered and like her old self.
Her psychiatrist still sees her once a month.
Leading up to the time she reached crisis point, SIL was at a bit of a loose end, having become too old for the centre/school she had attended for years, and there being no suitable follow on arrangements for her. This massively contributed to her problems. She now attends a centre for adults with SN every day and has a good routine in place. Mil also has to monitor how much time she spends watching soaps etc, and take care that she doesn't slip back into a fantasy world.

I wish you all the best and hope your db has a full and speedy recovery.

wow. Alf, the situation with your SIL sounds very, very similar and it is incredibly heartening that she has recovered now! I'm sorry that there were such problems and delays in getting her help..luckily, they seem good here.

DB is also more complex than others with DS that I know, and akin to your SIL he has reverted much more fully into fantasy since leaving college & due to having a loud, unpredictable housemate who he does not like.

Was she dx'ed with delusional disorder? or psychosis or something else? (feel free not to share). Did she have an imaginary world from childhood?

The specialist unit has a set routine, which DB will find hard but we are confident will help him eventually. His whole life revolves around instant gratification (food, cinema trips, shopping, bowling, music) and he refuses to work because he dislikes socialising. In hindsight we now realise what is possible hallucinations & delusions have been interfering with this (he'd say someone at a work placement did outlandish things like steal the stock or say something offensive when often this was not plausible).

Thank you so much for taking time to respond, i feel infinitely better knowing that someone else has come through this, and it is interesting that you also consider your SIL having ASD as a possibility.

Hi, I hope today has been an okay one for you and yours. I remember so clearly what DH's family went through during SIL's illness and really feel for you all. I'm glad that your db has such a great team helping him (we aren't in uk so different healthcare system..), I hope this makes the journey a little easier for him and you.

SIL Was said to have psychosis at the time, I don't know if she was officially diagnosed though, asked DH earlier and he thinks not. It was all so confusing, for the mental health professionals who didnt know how to deal with someone non nt, as well as for everyone else.
She was known to tell elaborate fibs even when young (I didn't meet SIL until she was 16, but there's a lot of family folklore :)), but this was put down to an overactive imagination and mischievousness.

I meant to say before that she can't stand other people with DS either.