DS with AS

[Teawaster]

I have a DS aged 12 who was diagnosed with AS in 2012. We have tried various therapies over the years , some private and some NHS when available. We have done physio, OT which included sensory integration therapy and the listening programme and we have also done Audiblox. We have spent a good portion of the last 3 years doing one thing or another and I' m just not sure any has made much difference. On researching I found many independent reviews of many of the therapies and I suppose hopes were raised. I'm not doing anything at the moment as I really felt with school work and so many tests in secondary, he was getting anxious about fitting everything in and there really wasn't enough time to do everything. He gets good support at school so am happy with that. The thing is I feel guilty about doing nothing and always feel that I should be doing more and am missing something out there that could help.

Would like to hear from other mums of DT's at similar ages as to what you do/don't do and do you just let school be the main thing at this stage. Ds' processing speed is his main issue which I think is impacted by his sensory issues which are not major but I think his inability to filter out noise has a big impact.TIA

Tnx Poltergoose. I will have a look.

Hi Teawaster I can so identify with this. My dd2 is 8.9 with ASD and language disorder. We have done absolutely loads of private SALT over the past 4.5 years.

I am considering The a Listening Programne later this year so would be interested to hear more about it (although it sounds like it wasn't a huge success for your ds).

For the first time in ages we are having a break from therapists and trying to remember I am dd's best therapist in many ways. All this therapy - it's a hard habit to break! I feel I should always be working on 'something'.

Tnx Handywoman. Well the OT that recommended the LP tested DS before he did it and concluded that he had poor auditory processing ie on 2nd centile. She tested afterwards and he was at the 30th centile. I could see during testing that he had improved but somehow I couldn't see how the alleged improvements transferred to an improvement generally. That's what often seems to be the case for DS , you see an improvement in his ability to do the tasks associated with the therapy but it doesn't seem to have much impact in overall functioning.

Thanks for that, TW dd2 has hearing loss and attention issues as well as slow processing. It's a nightmare.

If it's any use to you am now using resources at home such as The Incredible Five Point Scale as well as The Asperger's Toolkit. I'm working on dd2's self-awareness and emotional regulation. See...... I'm always working on 'something'

Welcome to MNSN btw

My DD is on a gluten free diet and is undergoing evaluation for a Irlen lenses to help with her visual perception /processing. I have heard there are earplugs available that filter out excessive noise and volume but don't destroy clarity...would love more info if anyone has it. She cannot stand going to discos but really feels at her age (11 and y7) that she misses out on opportunities to try to socialise by avoiding them.
She has just come off the waiting club for a social group for other kids with AS /HFA run by the council which meets once a week for a few hours after school and they have life skills support meetings and also a chance for the members to have social outings every fortnight. Hoping this helps. Maybe there is something like this in your area?
Agree with a polter that sometimes you discover strategies that work for the moments of anxiety /anger to diffuse and calm. Each individual is different. My DD has found reading books by other Aspies that try to explain what it is like to NT people has reassured her she isn't alone. Often she feels very alone and misunderstood I think and books like that really help her self esteem. The SENCO at her school is also working with her to put up a display about autism and AS in preparation for Autism Awareness Day in April which makes her feel very special and less anxious about school. Maybe it is a bit different for girls and boys..all the research seems to point to this, but these are little things which, although not specifically 'therapies', seem to have a positive effect for my dd.

Thank you Schmedz. I like the sound of those ear plugs. I googled and found some advertised for musicians in the US which are also meant to be suited for peoplewith sensitive hearing. www.earplugstore.com

Handywoman thanks for the info. I think I am guilty of focussing too much on improving things at school even though he has good support. DS does not suffer too much anxiety and has no meltdowns at home or school but I think as he is getting older he is a bit more sensitive to being "different" and is more vulnerable to being picked on.

Thanks tea waster for that link. Will check it out. Good luck supporting your DS. As challenging as it can be to help ease their passage through life, I wouldn't have my lovely, quirky, honest and caring DD any other way!