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Help/advice please 14 year old boy, has Aspergers, but OCD getting worse

Suasage

My son has Asperrgers, he is doing well at school to the point that he is in now on his 3rd year at a gramar school after spending years in a 'Special Needs' school.

He has problems problems sleeping, no matter what time he goes to bed, he is still getting up and going to the toilet until well after 1am. (He doesn't have problems going to the toilet, he just seems to keep himself awake.

This of course is causing problems at school because he is increasingly tired.

The other major problem is that he has OCD habbits. He won't touch door handles, pens, pencils, books, sit at a desk, walk on certain carpets. As you can imagine this makes school life so difficult for him and so frustrating for everyone. He is now missing lessons becasue he is found outside classrooms waiting for a door to be opened.

We supplied him with latex gloves to use in science lessons because now his exam results rely on practicle and he is just not taking part because he won't touch anything.

The doctor is useless, I should say doctor's are useless. We live in Lincolnshire which has the attitude that they will ONLY diagnose (Autisum/Aspergers) but then you are on your own.

The school is fantastic, but there is only so much they can do.

I am open to any advice what we can do to help or get over these problems as this is going to stop a bright extremely clever child failing at everything.

Thanks

  • in reply to Suasage

    Best of luck - I hope you get the support you need. I'm glad he's in a good school.

  • Thank you for your replies,

    I think my only option is really to push the doctor.

    I said the doctors are useless, they just diagnose, actually I meant to say its the services like CAMHS that won't assist. A few years ago, we had quite a bit of trouble with violent outburst, the doctor referred us to CAMHS and they refused to help. This happened an amazing 4 times over a period of a few years even though we had support from the school and recommendation from our GP. Each time they said we should seek help from voluntary services!

    We feel like we are on our own, although his school is very supportive and have excellent special needs support.

    Never mind we will try again.

    Thank you again for the replies.

  • Hello,

    Sounds like a tough time for you and your son.  Have you spoke with the paediatrician about sleeping issues ? I totally agree it’s not fair for him to be shattered everyday, my daughter  cannot sleep on a school night.  In the holidays and on weekends all is fine, she has been prescribed Circadin by the paediatrician and it does help. Someone I know uses Phenegan to help sleep this can be bought over the counter.but I don’t know about side effects etc. Might be worth some research.  

    Duckbread mentioned CAMHS to help with OCD traits, I know on the website you can self refer but as always it’s a huge waiting list.  Pester everyone, the paediatrician, the doctor and CAHMS.  Can’t your son’s class teachers just check where he is and let him in or leave the door open at the start of each lesson ? can he use a laptop instead of pens ? It’s not a big ask, make a list and go back to the SENCO with it.    I hope this is of some help, I am a struggling parent and I understand how hard it is. you can get the extra support,

  • I'm sorry to hear your son's struggling.

    I've suffered from OCD all my life, without knowing what it was until I went through therapy for anxiety (I got referred upwards when the therapist realised how many OCD rituals I had). There were quite a lot of facets to my OCD - contamination fears were a part of it, but there were other elements, like intrusive thoughts that used to stop me from sleeping at night. I went through cognitive behavioural therapy last year and it's made a huge difference to me - I'm now considered to be 'in remission', so it's still there in the background, but it doesn't take over my life like it used to.

    Unfortunately, my GP wasn't very helpful either - I think too many of them just see autism and don't look at co-occurring conditions, even though it's really common to have a mental health condition alongside autism. I'm not sure of the process for children (I'd guess the school can get CAMHS involved?), but I self-referred to my local NHS mental health service and that's where I was able to get help with the OCD.

    In the meantime, it's best to try not to allow too many 'safety behaviours' (e.g. he probably believes that wearing the gloves will keep him safe from contamination). It becomes a vicious circle where you keep adding new safety behaviours and you genuinely believe it's helping you cope, but the number of routines/compulsions end up taking over and you feel forced to do them. They don't actually provide comfort in the long-term; you just start to programme your brain to use those behaviours whenever you're anxious, so it becomes a hard habit to get out of. I had so many routines I filled several sheets of A4 paper when I had to list them all - they just built-up over the years.

    The good news is that OCD is one of the most treatable mental health conditions, and CBT was certainly very effective in my experience.

    I hope your son's able to get the support he needs and that things improve soon.