Non-communicative son

[JeanneA]

I just wondered if there are any parents or if anyone knows of any parents in a similar position as myself. As you probably will recall I am still awaiting a mental health assessment for my son, Glen who is 16 with ASD and learning difficulites. Glen has suffered with anxiety all his young life which has I'm sure has held him back in all things generally. Glen self harms, i.e. hits his head occasionally and hasn't spoken apart from around 4 words now in about 3 or 4 months.

 

Since being prescribed prozac in May, Glen has appeared much happier, smiles a lot, and is calmer in himself, you can see what a difference this medication (although very reluctant I was to go ahead with it) has made.

 

To all parents with children who are autistic with anxiety issues have any of you been told that it is in your child's interest to have a mental health assessment which would mean them being away from home for 6 or 8 weeks as an inpatient at a mental health hospital? There isn't (at the moment) any cure for autism after all, so what good really could come out of having this assessment?

 

Glen is now in the F.E. department at the special school he attends, he has started a 3 year course in life stills. He appears to be getting on well, he is now at long last doing things that are appropriate for him, i.e. gardening, walking/rambles, learning domestic skills, also physical activies, i.e. football/ball skills etc, travelling to the shops by bus, buying items. All those type of things. Glen still gets very anxious every morning before School, but I am told he is fine once he's there.

 

Glen has sensory issues and is attending sensory sessions weekly after school which is helping and I feel this should have happened a long time ago.

 

Over the years Glen has gone through many different phases, he has wet himself many times at school, stripped off many times, hit out at staff and himself, threw things, been verbally aggressive, not wanted to go to school, selective mute (like now) etc., but hasn't other parents experienced similar to me with their autistic child? Glen now seems more relaxed and happy than he's ever been although as I've already said he is 'choosing not to talk', or that is how it seems. So why is it that all these so called professionals think he needs to go away miles from home for an inpatient several week assessment?

 

My feelings are Glen needs stability which seems to be happening now since going into the F.E. department, learning life/social skills. I would very much appreciate your views please, do you agree with me or do you think Glen should go ahead and have this assessment if it goes ahead?

[oxgirl]

Only my opinion, of course, but I feel like you, that if Glen is settled now and doing well with his new course than I'd be reluctant to uproot him from that at the moment. It sounds like they're doing good work with him and if he's signed up for three years things could improve a lot during that time. Could you ask the professionals if they could postpone the assessment until after the end of the course or if things start to go downhill again. Surely, if they see that he is happy at the moment and doing well, they might feel that an assessment at this time could do more harm than good.

 

Glad things have settled for you and hope it continues to improve.

 

~ Mel ~

Edited September 16, 2010 by oxgirl

[baddad]

Hi Jeanne -

 

TBH I don't really have any knowledge of the things you are posting about, but one part did ring a bell for me.

I don't know the full in's and outs, and have (sort of) 'crossed swords' with people over issues surrounding the specific situation, but this does sound a bit like a scenario detailed in some other posts.

In a nutshell, and with no desire to 'scaremonger' or anything like that, I think the potential danger of Glen attending something like this assessment is that it may not simply be a case of 'six weeks and then home'. In your situation, I would be seeking firm reassurrances on that, in writing, and then going over any writing with a fine tooth comb to look for any possible loopholes.

Once satisfied on that, You can only weigh up the situation on the merits of what they are offering to do and what they anticipate as an outcome. With an issue like medication, six weeks of close monitoring, adjustment, 'tweaking' could make a huge difference to Glen's - and your own - life, so I can see lots of potential benefits if that's one of the areas they're looking at.

 

Hope that's helpful, and please don't be put off of anything on the basis of my (really rather ill-informed) 'caution'. Hopefully others will be able to offer something a little more substantial, even more hopefully being able to advise that my 'caution' isn't worth worrying about!

 

L&P

 

BD

[Karen A]

Hi.

It sounds like things are so much better than a few months ago which is really good news.

Is there no option to turn down the assessment for now with scope to request it later if needed ?

An assessment of this type would be very expensive so they may be pleased to delay if you suggest it.

Karen.

[lorryw]

Hi Jeanne,

Wasnt the assessment suggested when you and Glen were having a tough time a few months back and it was seen as the best option?

From what you are saying that "moment" has now passed and Glen sounds a lot happier and starting to enjoy his new opportunities at the FE unit.Personally if he was my lad I would seriously consider what a spell at a hospital for a mental health assessment would achieve (just my opinion)

Loraine

[JeanneA]

Thanks for all your comments they are appreciated keep them coming! As these specialists are coming on the 30th to assess whether it is in Glen's interests to have an assessment I will of course listen to what they say, they might say that it isn't in Glen's interests yet so we'll have to see. To be honest I am very undecided.

[call me jaded]

I would ask what the range of outcomes would be.

 

It could be that someone in the local authority is building a case for funding to come from the health service towards Glen's package of support when he reaches adult services, instead of it all coming from the local authority's purse. To do that they would have to show some health needs (in this case mental health needs). Apparently it only needs one 'severe' in the adult care assessment for the criteria for health service funding to be met. An extended inpatient stay would achieve this.

 

The case that was posted about on here was removed at the father's request, but it seems he has lost all input as a parent into where his son lives. The dad's three day respite break has turned into 9 months (and counting). Crazy and disturbing but perfectly feasible that the situation is being manipulated for funding reasons.

 

As ever it seems the response is offered long after the crisis. I'd try to put it on the back burner until he finishes further ed.

[SimonC]

A time in hospital can both be worse and better, and it is important to clarify both what they would do in the hospital and what their thoughts about the outcome may be. It can help to relax your son in some case, but it can also make him depressed.

 

My own experience is that such a solution are being presented when the therapists doesn't know what to do or if they haven't time for it. Once I was in a very chaotic phase, where nothing worked I got a choice to either start with zyprexa (neuroleptica) or get in a mental hospital for a month or more. Those was the therapists only solutions for me, but I rejected they both. The medication only **** my brain up totally (from earlier experience, and which I still has negative after-effects of 4 years after I ended it), and to be placed as a crazy man in a mental hospital wasn't something I wanted. I wasn't crazy.

 

For me, today, a mental hospital may be a solution if I fall so much down that I simply need some others to care totally for me (more than the help with organizing, toothbrushing and so as I get today), but I will have the right to define if Im in need of it and also the conditions of what they should be allowed to according to me (no medication in example).

 

I have never understand what elective mutism is about, but I know that I choose a strategy to not talk with a person/some persons for a longer or shorter period sometimes as a mean to achieve different things (like making things clear for others about an issue, getting extra care and attention, and so on), and it works very good. I don't call it elective mutism, since I know why I use it. But it may sometimes been such reason for it in people with elective mutism also I think.

 

Anyway, get the clear specifications from the professionals of why they think he are in need of hospitalization before taking a choice. Professionals and experts may sometimes having their own directions with things and not working for a man's best, so one have to be aware and critical.

Edited September 21, 2010 by Kathryn
language

[JeanneA]

Thanks Simon for your great comments, it is very interesting to hear of your experiences. Also thanks to everyone else. I will listen to what the experts have to say on the 30th, however as Glen is settling into FE I am reluctant to up and move him into a mental health hospital for weeks especially if in the long run it doesn't help him.