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Aspergers Syndrome and OCD


Guest Mickymouse

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Guest Mickymouse

Hi,it will be obvious that I am new on here. Having read what some other parents have written,I decided to take the plunge!

My son is 20 years old, he was diagnosed with Aspergers Syndrome when he was 7 years old. Because of his Aspergers we were used to having 'obsessions '. They seem lovely compared to what we have now. So I think maybe we didn't notice at first when things were getting worse. He was fussy about different things but we had learnt strategies to help him to cope with life. Over the past 4 years he has become more and more obsessed about germs and our home being contaminated. Things have gone down hill even more this year, he narrowly avoid being sectioned at Easter. He has all the right experts dealing with him and is on medication to help him. The biggest problem they have with him is that his Aspergers seems to 'get in the way' of CBT, even his Phycologist couldn't get anywhere with him! I haven't gone into all the complicated details of our daily life,trapped with our son in our home with his OCD.

Is there anyone out there with the same problem? If there is someone that has successfully improved with AS and OCD maybe they can point us and our experts in the right direction? Look forward to hearing from you if your out there!

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Guest LauraMac

Just want to say sorry that you're having a tough time with your son. OCD and Aspergers can link, I've seen a number of people who have both, there definitely seems to be a link. I have a friend who's daughter has Aspergers and OCD and she would say that it's difficult sometimes because of the literal thinking Aspergers causes her. With the intrusive thoughts it can be very hard for her to dismiss them because of the literal thinking.

Laura x

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Guest Bushbaby

Hello Mickymouse

I do feel for you. OCD and AS in one person is really difficult for both the sufferer and for families.

My daughter is almost 18 with OCD and AS. The OCD was detected before the AS and at the age of 12 she was admitted to an inpatient unit for 6 months. AS has only been diagnosed in the last year. I will agree with you that for my daughter, the AS has held her back with engaging with CBT. She flat refuses any therapy at all. We even have to battle to get her to take her meds. She will not self-medicate. We have to personally put the meds in front of her. As a result, her OCD has morphed into BDD and she is tortured with it. She receives no medical support at all as CAMHS have washed their hands of her because she won't engage with treatment, even after an attempted suicide. We had a meeting about going into adult services and they say there is no point taking up medical time as she won't engage, so they have just agreed to give up on her because she is a lost cause.

I feel we were fortunate to access hospital treatment at the age of 12, as this did the trick for making her work on her difficulties because the only way out of hospital was to engage. She hated every moment of hospital, but she worked with her Team so she could leave as soon as possible. Is there any chance of inpatient care for your son? My daughter's OCD has improved because of her hospital stay, but it is still challenging. There is no reasoning with someone with AS, no matter how well you know them.

I wish I could point you in the right direction, but I'm struggling with this myself. Have you contacted the National Autistic Society? They have a helpline and may be able to suggest a way forward for you, if nobody can offer advice here.

I do think more research needs to be done in the area of AS and OCD as comorbid conditions, as together they are a living hell for both individuals and their families and it's difficult to get professionals to see how tough life is.

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Guest Sally44

Anxiety is part of being on the autistic spectrum.

My son has a diagnosis of an autistic spectrum disorder, anxiety disorder and now OCD. He also has a number of other diagnosis - but is average cognitive ability.

I have had to fight every inch of the way to get health and education involved and to work together.

My son was on medication via CAHMS, but that did not seem to help, infact it made him emotionally flat and he just didn't talk much. Since we have stopped medication he is much more like his old self. His sense of humour has returned.

We were not offered any CBT. And Clinical Psychology refused a referal from both CAHMS and from his school because they did not have a 'suitable' service for him. They are an acute service, only offering a limited number of sessions, which they said they did not feel he would be able to access or generalise due to his ASD

So I contacted the Patient Liaison Service at our local hospital and asked them to find out why my son was not being offered any kind of therapy for a mental health disorder.

They came back to me and said they had spoken with the Clinical Psychologist, who now agreed to accept any further referral. Hurrah...

Anyway, we went to see her and she explained that due to him being autistic she did not believe he would have the skills to access cognitive behavioural therapy - but that he should have behavioural therapy and that his environment should be managed by adults in school. She said he could not manage his anxiety at all and that we should not discuss OCD with him, or ask him questions about what was causing his anxiety. The whole approach seemed to be to reduce his anxiety and in reducing it, that should reduce his OCD symptoms, which has happened to some degree.

She also agreed to give a half day training to school staff that work with my son. That is a minor miracle. I have sent her some questions about how we eventually, at some point, move forward. At some point my son has got to learn how to manage his OCD, UNLESS they are saying that he will always need 1:1 adult support to manage his anxiety.

So how do you access help/support for your son at age 20 with OCD and Aspergers??

I have spoken with the Maudsley Hospital. They do have experts that work with children and adults with both OCD and ASD. They would see your son and the family probably for a day and would put together a report and advice on how to move forward. So maybe you need to ask for a referral to them for a tailored approach for his OCD that also factors in the ASD. If you get refused or fobbed off, contact your local PALS service at your hospital to find out how to challenge that decision and how to move forward.

My son also has contamination OCD, and also intrusive thoughts about things that will happen to hurt/kill the family or himself if he does not carry out his compulsions. My son was also out of school and housebound for about a year when he was still in primary school, and he has been out of school recently too. So I know how limiting it is on the child, and everyone in the family, but especially the main carer who has to be with them all the time.

Edited by Sally44
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Guest Mickymouse

Thanks for your replies. Be in touch in a few days. Just recovering from having to complete PIP-personal independence payment and ESA-employment support allowence forms,both due back within days of each other. Dozens of pages!

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Guest lizinlondon

A psychologist should really devise a programme to meet the needs of their client, whether they have Asperger's or not. This is their job. Maybe the client can't do traditional CBT but it is a psychologist's job to find a way of getting through.

I am not a parent nor do I have Asperger's, but I have severe OCD, and I would say to you guys to persist until you find a good psychologist who has experience of Asperger's. They should definitely be able to devise a programme to help your kids. After all, they do nearly 10 years of training to get their posts, I cannot believe that they would turn people away. It contradicts the whole point of psychology! Good luck and keep looking. It took me three therapists before I found a good one that I have now.

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Guest Sally44

Thanks for the post. Yes I know that children with an ASD and OCD should get referred, but it seems like having a diagnosis of an ASD gives them a "window" to refuse access to any service because they say the child/adult will not have the cognitive skills to access CBT, and that they won't "generalise" things learnt from one environment into another etc.

To a degree these difficulties are true to the disorder. But, as you say, a psychologist SHOULD be able to devise some kind of therapy, and if they cannot they should refer on to another service that can ie. the Maudsley hospital that do specialise in both autism and OCD being co-morbid. But try getting a referral!

The NHS NICE Guidelines are very clear that anyone with OCD should be offered CBT.

I will see what this training day in school recommends. I have sent the psychologist some questions I would like answered on the day ie. at what stage do we start to deliver therapy to help him overcome the OCD. I agree that currently he may need his anxiety reducing and full time support to help him throughout the day. But the known way to reduce and overcome OCD is to resist the compulsions, leave with the anxiety and also exposure therapy. So how can we adapt that to him is the big question, and when will we know [if ever] that he is able to start that kind of therapy.

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Guest Bushbaby

I agree with you, Sally. Having AS and OCD is a challenge for the medical authorities and they do pass the buck or, in our case, give up as they have decided my daughter is nobody's responsibility except her parents!

Mickymouse, the PIP forms are one thing, the 15 month wait is another (although I think they are speeding this up) and then you have the one hour interview with an alleged medical person who has no clue about AS or OCD. It's like wading through treacle. You have to go through it all again in 2 or 3 years time as well. Great fun! Good luck with that!

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Guest lizinlondon

I just can't believe this happens! Keep pushing and looking for the right people. If I was a psychologist, I would love to help someone with AS to overcome OCD. Good luck x

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Guest Mickymouse

Don't worry bush baby I have been filling in DLA forms for my boy since he was 7 ! Hate the damned things,but I am determined he will have all the help he is entitled to.

Here is our story do far.

We have never had any help from social services until our son turned 16. Have always sorted stuff out ourselves and fought our way through his education with the help of the our local Aspergers group-Aspergers East Anglia. Been with them again since he was 7,even before we got his diagnosis. The only reason we asked for help from social services was because we felt we could no longer carry on,my husband is 67 and retired and I am disabled due to problems with my back. We cannot keep up with his constant demands and his behavoir when we try to control his use of soap etc. First of all they sent us along the wellbeing service trail,which ended up with a young not very experienced phycologist who couldnt get anywhere with him. He wouldn't talk to her and she thought we weren't helping him to co-operate with her. She'd never dealt with anyone with Aspergers as well as ocd,before him. Now we deal with the social services learning disabilities team and their phycologist. And guess what? She cannot work with him,he won't co-operate! His phyciatrist,who is a very experienced Dr wants to help him but doesn't seem to know how. He too is rather puzzled by our sons behaviour. They managed to get him admitted to a small hospital unit but as he was a voluntary patient couldn't keep him there. So they can claim that he won't co-operate with the therapy. The phycologist says we should try to control things at home but be honest we no longer have the energy to fight with him over how much soap and how many tissues or wipes. He is very domineering and wants to dictate to us how he wants things to be and how we behave in our own home. Because of this they are trying to find him a suitable care home,where he will his own small flat and have carers on site to work with him all the time. I think they will have a fight on their hands. I have in the past,asked about referring him to the Maudsly hospital in London but they seem to think their plan will work. Time will tell.

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Guest Sally44

Have you talked with PALS about a referral to Maudsley Hospital?

He has a mental health disorder that the team at the Maudsley have experience of ie. Aspergers and OCD. He needs to be seen by them BEFORE they try to move him. Because you know that if they try and he refuses, that he will not attempt it again - that is autism. So it has to be done right so that he does not fail.

I always find that putting things in writing helps. Because then there is a paper trail rather than a phone call or conversation that can be denied.

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