Help! I need ideas to help my brother cope with his AS+OCD

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KateKoro
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10 Aug 2008, 11:46 am

Hi All, How are you doing? I'm new here. I've just spent a long session on my PC trying to find some positive information on how to cope with having AS +OCD. My brother was diagnosed many years ago (He's now 29) he lives at home with my folks. I've read so much about school and teen ages and to be honest so much concentrates on the problems encountered and why, but not much at all on ways to gain a little control. He's on Prozac for the OCD and has been for a long time but it's not working. His OCD is spiralling out of control. He's showering for hours and scrubbing his hands raw. He changes clothes several times a day. His mood is also out of control. The tension at their house is building to an awful degree and my folks are at breaking point. He seems to have completely lost control and the obsessions are taking over his life more and more. He has been refferred to the CPN and has had counselling but the counsellor was less than reassuring. He doesn't work as his rituals mean he is always very late for literally everything he does. He enjoys playing the guitar and is exceptionally good at it and his hobby is working on computers (building and fixing them) but even this makes him very anxious and obssessive. To relax he sleeps. Anytime of the day he just sleeps if it all gets too much. This week has been very difficult and he has been threatening suicide, obviously now Mum and Dad are really concerned and depressed themselves. The little information I have gleaned from the Aspergers Foundation site and OASIS is that maybe he needs an anti-psychotic drug and that he possibly needs cognitive behavioural therapy with someone in the field of Aspergers. That is about all I can find out. Does anyone have any ideas? I want to help him and my folks, no-one is expecting a cure or instant results just something positive and pro-active. Is that possible? What can I do???????



Last edited by KateKoro on 11 Aug 2008, 12:13 pm, edited 1 time in total.

philosopherBoi
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10 Aug 2008, 12:13 pm

First off drugs are their to help they are not silver bullets, your brother needs therapy its the only thing that helps. Also some drugs have little to no affect on some people a different drug might "help" him some more.

Also suicidal thoughts are bad but I guarantee if he is locked away because of them he will never get better mental hospitals are not good places for anyone to be especially autistic people.

The best thing you can do is be there for him and never stop loving him remember love is the most powerful thing out there nothing can truly beat love.



2ukenkerl
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10 Aug 2008, 12:13 pm

First off, you should tell him that, if he needs THAT much control, etc... he should GET HIS OWN PLACE! I used to be KIND of similar, albeit not to such a big degree, an I "mellowed out". He may also! But DON'T let him destroy the lives of others, like his mother! BTW steam cleaning isn't the same thing. Have you asked him WHY he cleans so many times, etc?



Danielismyname
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10 Aug 2008, 12:14 pm

A combination of somewhat severe OCD and Asperger's poses an interesting conundrum, as the rigid thinking and fear of change with AS will make it hard for CBT to work [for OCD]. Usually, OCD is precipitated by a stressor when it's with AS, i.e., anxiety due to a number of causes that AS imparts on the individual; recognizing the stressor itself is the first and most important step to managing the OCD (OCD is an anxiety disorder that becomes worst when people can't cope with the environment).

An atypical-antipsychotic will work for the OCD and blunt the overall anxiety, but he has AS, so one should be wary of giving him such (psychotropic drugs and ASDs don't mix well). One could try a short trial of a more powerful anti-anxiety medication, like Valium (it's only good to take it for a month at a time due to problems with tolerance), and see if this lowers his overall anxiety so that his obsessions and compulsions aren't as severe.

I'd look for anything that could perhaps precipitate the OCD, a [massive] change of routine, problems he has that he keeps to himself (those with AS tend to keep their emotions to themselves), or perhaps he may feel he has expectations on him to be "normal", and the thought of such drives him to the brink of OCD.

It's a hard one, as I was in a similar place, and it led to a month long psychiatric hospital stay after breaking down. CBT from a psychiatrist (exposure therapy), + Zoloft (like Prozac), "cured" my OCD (it's still there, but it doesn't rule my life anymore).



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10 Aug 2008, 4:12 pm

Hi, KateKoro.

Can you bring your brother here and turn him loose?

Ask him what he thinks of himself and his situation.
Ask him to write a one-page summary and post it here.

I know that in my case, from day-one through age 52, no one has bothered to ask me what I think. They knee-jerk, they guess, they assume, they chatter to each other about my “problems.” They have no idea what my problems are, and give me the opposite of what I need.

They believe that they have asked, but they can't hear me. They reject everything I say, based on their own baggage and limitations.

I just see a bunch of people, some with tiny minds, some brain-dead, trying to force me into a mold that they can understand. AND THAT IS MY WHOLE PROBLEM.

My problem is not that I am “rigid.” My problem is that they are rigid and I am a free spirit. The world just can’t handle it. Society would rather destroy me than allow me to be different.

My own mother sees my assets as disabilities. She sees the Aspergers as a disease to be cured, and believes that the clone-daughter would immerge if only they can find a way to kill this horrible monster. Newsflash – This is the real me. Deal with it. The only way to kill this horrible monster would be to give me a labotomy. I’m crazy because you have done everything you can do to make me crazy.

My problem is not that I am delayed in any way, but that I am way ahead of them, in ways that they cannot imagine. I’m just not good at doing things THEIR way.


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KateKoro
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10 Aug 2008, 4:51 pm

Thanks ever so much for your thoughts and suggestions. It's amazing to hear something that makes sense and is pro-active!

PhilosopherBoi:

I understand that drugs are not going to cure him but it's the Rituals and Obssessions that are getting out of control so his anxiety levels must be very high, i'm not sure why. I don't really see the point of him taking prozac if it's not relieving the anxiety. I remember he was on something else but it made him sweat really ad which is not a good combination with the ritual washing! Any suggestions on alternatives? Also what kind of therapy? Have you had therapy? If so, did it really help? Did you want to have therapy? He seems convinced that it won't work so he won't try it properly, with the right attitude i mean. He gets lots of attention and love. My mum is constantly making sure everything is ok for him. She is always checking to see if there is any news regarding AS. I am always there for him, we talk most days. He and Dad spend time together playing their guitars etc

2ukenkerl:

I don't think he would survive on his own, his rituals and obssessions would come before any emergency situation e.g fire alarm etc. He cleans and scrubs to punish himself if he has a problem or if some memory has disturbed him. It makes him feel better inside if he can control outside with the extreme cleaning. I am really worried about my mum, she has been dealing with his ever worsening condition all is life and she really doesn't want the doctor to put him in a home she just wants help to know if she is dealing with him in the right way by going along with his requirements or if she's making him worse.

Danielismyname:

OK I think I get what you're saying. He hasn't had a change in routine but he has had several computers to fix and re-install (mine included!) 1 was a big problem and although he ghosts everything, he never uses the ghosts he just starts everything from scratch (a painfully long process where he's concerned as he has routines about this too) I think that has stressed him but it was a few weeks ago. I think a few things have happened in the last week that have tipped him over the edge. Also because the cleaning and washing has got so out of hand my folks are getting pushed to their mental boundries so things are not good at home. I can try to talk to him about it if he was open up.

Why do anti-psychotic and asd's not mix well? in what way? how would just a month's course of valium help, would he not be back at square 1 after the end of the month? When you had therapy how did it work? I always thought therapy won't work unless you want to help yourself, I don't know if I can persuade him to have therapy because of past experiences (he first had therapy when he was 4 years old and has had therapy on and off since then but nothing has helped. Did you see someone who had experience with aspergers? i've read that the approach has to be different with as+ocd than just ocd as the motivation is different and that only a professional with as experience can really help. what are your thoughts?

Thanks in advance for your thoughts, I am lost and at a dead end on my own.



corroonb
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10 Aug 2008, 5:04 pm

I have both Asperger Syndrome and Pure OCD. I obsess but don't have rituals. Anafranil (clomipramine) has helped me a hell of a lot. I no longer get intrusive, disturbing thoughts. If Prozac is not working, he should try a different medication.

Benzodiazepines such as Valium or Xanax are likely to aggravate the extent of his OCD in my experience.

A good therapist and a psychiatrist each with knowledge of OCD should treat him.

Also do not reassure him. Reassurance only prolongs the problems of OCD.

This is the best site for OCD I've found on the net. The forum there is full of OCD sufferers and is very supportive and positive. They helped me a lot.

http://www.ocduk.org/



KateKoro
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10 Aug 2008, 5:05 pm

Hi Tahitii

I have asked him and I do listen to him. I try to understand as best I can but as I said finding information on Adults with AS+OCD and how best to understand and help him is proving difficult. None of us know if what we say or do is right or making him feel worse. we are all trying our best because we care and are concerned. None of us want to see him ruled by rituals and sitting in his room all day, sleeping, watching tv or using the computer. We don't expect cures we just want to help.



Tahitiii
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10 Aug 2008, 5:17 pm

Is he allowed to come here?
Would he be able to participate in these kinds of conversations?


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KateKoro
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10 Aug 2008, 5:18 pm

Hi Corroonb

I think he's due a medication review with the doctor so i've suggested to Mum that he changes medication, it's obviously not working. I will mention clomipramine, many thanks for that. I was looking at the OCD UK website today. What confused me was that somewhere in the pages I read it said that having therapy for OCD was not straightforward when AS is involved as the motivations behind the OCD are different so you need to see someone trained in both. Maybe i'm wrong to think it but it seems rather odd to me that when he goes on holiday each year, for the 2 weeks he's away his washing etc is improved but as soon as he's home again it's back to the strict routines. He's getting worse and worse so surely with help he could get a bit better (The OCD I mean)



KateKoro
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10 Aug 2008, 5:24 pm

I'm trying to get myself prepared in order to sit down with him and discuss some kind of plan. He doesn't like talking about how he feels much though usually he's ok with me. When I can sit down with him I will encourage him to register.



Last edited by KateKoro on 11 Aug 2008, 12:17 pm, edited 1 time in total.

corroonb
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10 Aug 2008, 5:26 pm

KateKoro wrote:
Hi Corroonb

I think he's due a medication review with the doctor so i've suggested to Mum that he changes medication, it's obviously not working. I will mention clomipramine, many thanks for that. I was looking at the OCD UK website today. What confused me was that somewhere in the pages I read it said that having therapy for OCD was not straightforward when AS is involved as the motivations behind the OCD are different so you need to see someone trained in both. Maybe i'm wrong to think it but it seems rather odd to me that when he goes on holiday each year, for the 2 weeks he's away his washing etc is improved but as soon as he's home again it's back to the strict routines. He's getting worse and worse so surely with help he could get a bit better (The OCD I mean)


AS does complicate treatment somewhat. It's important to identify obsessions he enjoys and obsessions that upset him (dirt,germs, contamination). The obsessions that upset him are the OCD, the other obsessions that relax him are AS and should not be treated in the same way as the OCD. If you have the money, you may be able to find someone knowledgeable in both areas but I doubt it.

The AS doesn't really need treatment unless he finds socialising impossible or sensory issues overwhelming. The OCD is the condition that I would treat first and then maybe consider the AS.

I treated my not so severe problem with just medication but in severe cases cognitive behavioural therapy is the recommended treatment. It is difficult and expensive but it has the highest success rates for treatment of OCD. Talk therapy will not really help him as he needs to learn to trivialise the thoughts which make him respond with ritualised cleaning.

My biggest problem was the OCD. When I got over that, my depression lifted and I accepted the AS as a part of me and not a "disorder".



KateKoro
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10 Aug 2008, 5:35 pm

Thanks Corroonb

Thanks for explaining that to me. It is the OCD that needs treating. Really the AS alone is manageable though i'm still looking for a book or something that gives help on how to cope with it as an adult (any ideas?) just so we know we are doing the right thing by him. I will relay the information you've given me and i will broach the subject with him asap.

Thanks again



Last edited by KateKoro on 11 Aug 2008, 12:19 pm, edited 1 time in total.

corroonb
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10 Aug 2008, 5:42 pm

KateKoro wrote:
Thanks Corroonb

Thanks for explaining that to me. It is the OCD that needs treating. Really the AS alone is manageable though i'm still looking for a book or something that gives help on how to cope with it as an adult (any ideas?) just so we know we are doing the right thing by him. I will relay the information you've given me to my mum as she is seeing the doctor on his behalf tomorrow and i will broach the subject with him asap.

Thanks again


There are many good books on AS. Jessica Kingsley Publishers seem to have the best books in the field.

You can find them here:

http://www.jkp.com/catalogue/index.php/cat/autism

Donna Williams and Temple Grandin are two excellent autistic writers who describe autism from a personal perspective. Tony Attwood is also very good especially about AS in particular.

Good luck helping your brother. OCD is a horrible condition.



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10 Aug 2008, 5:49 pm

It sounds severe enough to warrant active professional intervention.
It sounds as though he has very little behavioural control - and it's hurting everybody including him.
Something needs to change - even if it warrants a short inpatient stay.
If things continue in their current direction, it won't be long before there's no alternative.



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10 Aug 2008, 5:55 pm

Quote:
Maybe i'm wrong to think it but it seems rather odd to me that when he goes on holiday each year, for the 2 weeks he's away his washing etc is improved but as soon as he's home again it's back to the strict routines.
If I were to move in with my mom (as she is always trying to make me do), my anxiety level would go through the roof. Living with family--especially family who are constantly trying to run your life--is extremely stressful. Living on your own is preferable, and will usually make things better. If it's not possible, then an apartment nearby or the basement/attic with a door that locks is another option.


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