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Hi, my name is Lilavatie! How can we help my 36 year old autistic son?

Lilavatie

My son is 36 years old, autistic and non verbal. Also an epileptic since 5 years old and on medication ever since. Was always a "happy chappie" - no odd behavioral problems and not aggressive at all.

Had an epileptic fit after 17 years and became very destructive - breaking cell phones, smart TV, pulling out water pipes etc. Also started ripping his clothes completely and wetting himself - bed, floor, chair.

Neurologist started him on Risperidone together with epileptic medication. Not much change so Dr. weaned him off. Then, in between he was hospitalized for pneumonia - also tested positive for the corona virus. spent 6 weeks in hospital - +- 3 weeks in ICU. Recovered completely and was discharged. Back home, his negative behavior started again and he also seemed very depressed.

Psychiatrist put him on anti depressants - Lexamil and Miradep. Occupational therapist doing sensory integration therapy with him. Very co-operative during therapy sessions - has been going for sessions for about 6 weeks now. He seems much happier but no change in his negative behavior - he is still destructive, wets himself all the time and completely rips his clothes daily.

Please help. What should we do to help him? Your response will be highly appreciated as we are desperate.

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Rosie_Scope

Hi @Lilavatie, welcome to the community. I'm so sorry to hear your son is struggling at the moment and along with all that happened with his hospitalisation it must be really stressful for you all.

Is it just at home that he has the destructive behaviours? Could there perhaps be something sensory that is overwhelming him?

The National Autistic Society has a page about distressed behaviours that might be worth a look:

Distressed Behaviour: A guide for all audiences

Some people find it can be helpful to keep a diary and note down anything in particular that might be affecting how he's feeling. Sometimes that can help you spot some patterns and work out if there's anything you could change to help him feel more settled.

Do you get any other support from social workers or case workers of any kind on top of the therapy?

I hope some of our members might have some ideas too. Fingers crossed you can find a way forward soon.

durhamjaide2001

hi and welcome to the forum I just wanted to remind you that we can't give any medical information and what we tell you is experienced based so it might not be right for you.

I would suggest that you have a look at the coffee lounge for a general chat or the games den for some fun

Rosie_Scope

We're happy for people to share medical information and experiences if they'd like to and to say what worked for them, it's just medical advice that we can't give. So for example, telling someone what medication they should take or giving people the kind of advice they'd need to get from a doctor or health professional.

Hopefully some members might have some other ideas and experiences to share soon 😊

durhamjaide2001

https://forum.scope.org.uk/discussion/comment/960192#Comment_960192

it's just a general thing I say to welcome new people.

https://forum.scope.org.uk/discussion/comment/960185#Comment_960185

thank you

MsR

Lilavatie I am sorry son is finding things so difficult. I don't if your son team has ever discussed Abilify with you, but that is another only supported treatment for autism. It helps some people with behaviour issues.

Does son get social support with socialisation and if not do you think it could benefit him. I tend to think just staying home isolated really can lead to pent up frustration if anyone. I should think with higher support needs that there should be social support like day activites for autistics severe people. . May be you could get a referral somewhere or have a social worker on board if you don't.

Lilavatie

Dear MsR

Thank you for your response. Ablify is an option my son's psychiatrist is currently considering - hoping for a positive response. I am also considering the social support issue. Have put out feelers waiting for responses. Thanks again for sharing. Your comments were very helpful.

Lilavatie

Hi to all.

Thankyou very much to all of you for responding - much appreciated. We are already implementing many of your suggestions but it was very helpful to know that we seem to be on the right track. Fingers crossed for something to work soon.

Also, if any of you think of any other experiences or ideas that we can use, please let me know. Thanks again.

Amaya_Ringo

As an autistic kid, I was very demanding with attention, and activities. I wanted to be doing something all the time, and so I agree with what someone said above, about activities and such. You said he engages well with the therapy -maybe that's because he is engaged with something outside of his normal cycle. I'm not saying you are neglecting him, of course you are not, but with his communication difficulties, it might be hard for him to express how he's feeling and that's leading in part to this behaviour.

It certainly sounds like frustration, although a sensory trigger in the house that you're not aware of is also possible. I'm very sensitive to smells and pick up things in the house nobody else does. Someone used peppermint oil downstairs once and they couldn't smell it, but it confined me to the upstairs for twenty-four hours because it was so overpowering. I also was able to smell the scentless paint and the mould paint, both of which are meant to have no smell, for weeks after we had redecorating done. Something small like this could be irritating him. I noted that his behaviour got worse after a major seizure. I don't want to trespass into medical things at all but I wonder if this made him more sensitive to certain things.

I wonder about his ripping his clothes and whether that's a sensitivity issue too. Some autistic people have issues with the sensation of something against their skin.

A good starting point may be the activities in the therapy session and anything that can build on from there. And try to build in anything he shows real interest in, whether in a book, on TV, whatever.

A disclaimer here. I am autistic, but I'm not medically trained or an expert in any respect. I'm also not non-verbal and have no experience of epilepsy. You know your son best, so hopefully if any of the above clicks for you, then great - but feel free to disregard it if you think it doesn't help in this case.

Lilavatie

Thank you for your response. I agree with activities. We also feel that he is bored, frustrated as he is no longer interested in the activities he use to do before - like watching cartoons on TV, going for a walk or a drive, splashing in the pool, tapping on objects etc. Engages well during therapy but only for short periods and then his negative behavior starts again. With the help of the therapist we have extended similar activities at home but sadly, he shows no interest in engaging in any of them.

Trying to get him admitted to a day care center for adults with special needs. When younger, he attended a similar center some years ago. He was happy there so perhaps this might be the solution because it will get him away from home for a few hours daily. Fingers crossed - will keep sharing should there be changes.

Thankyou for reaching out to me. It helps to know that we are not alone. We are grateful for any suggestions and ideas.

durhamjaide2001

i would just be careful with day centres because most day centres are focused on people who have more complex needs than your Son and I wouldn't want your child going somewhere where he isn't stimulated enough because I went to a special needs secondary school and that didn't end up well.

Lilavatie

Noted. Sorry I forgot to mention that the Day Care Center I was referring to has a special separate group for Autistic Adults. This is why I considered it. When he was younger, my son attended a school for Autism and he was happy there and adjusted well.

Thankyou for your concern and kindness. God bless you.

durhamjaide2001

aww thank you that's made my day

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