Parent to 19 yo Asperger seeking support an... - Autism Support

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Parent to 19 yo Asperger seeking support and advice.

Rainbowchaser01
Rainbowchaser01

Hi I’m new on here trying to get some support for my 19 yo Aspergers daughter. She is extremely intelligent and talented but her social anxiety and asd means she was unable to complete college and basically does not leave the house alone. She relies on me for everything, and the only financial support she gets is PIP. Since she turned 19 we no longer receive any support, she was under Camhs’s. I pay for private counselling and speech therapy but more recently due to covid that has stopped. I’ve emailed autistic society and tried ringing but not getting through. Im really at a loss what to do or where to get advice. I’ve no idea how to apply for benefits in her behalf because she would struggle speaking to anyone.

Any ideas or advice welcome, thanks for reading.

10 Replies
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If she can't speak to anyone, you can apply for benefits as her carer; they will need her to sign a form to say you're authorised to do so.

However if she's highly intelligent I'd suggest looking for online work together - upwork.com and freelancer.com are good places to start, or mailchi.mp/69d207801f23/fre... - but if she has specific interests in an area it might be worth getting her to research online freelance work in that area instead.

If you can do some of the initial admin with her, I suspect it would boost her confidence a lot to be earning money and being able to use her skills.

Even if she can't deal with actual work right now, something like freecodecamp might be a good idea to give her saleable skills and let her learn to work online in a relatively safe and no pressure environment.

Thank you for your advice, online working is something I have considered. She can speak, read and write Japanese self taught but does not have any formal qualifications. I have discussed this with her but she doesn’t feel ready to use her skill. She also does fantastic illustrations and I’ve advised her to put a portfolio together. Will definitely look into these websites when she feels more confident.

Is the counselling working on the social anxiety aspect? That should be a high priority as it will of course limit the opportunities. CBT is not necessarily the best approach for someone on the spectrum. More work perhaps on Autism self-awareness and how this impacts on your daughter. You mentioned speech therapy - are aspects of speech associated with the social anxiety and compounding the issues with Autism?

Thank you for your reply. She was working on her anxiety at college during counselling sessions but unfortunately it all became too overwhelming especially with exams coming up. She was predicated A’s in physics, chemistry and biology. It’s impacted on her greatly and she has almost given up. The speech therapy was to improve her communication skills and give her confidence speaking in public.

I just wanted to ask what is your daughter's attitude to her diagnosis? Is she accepting, confused or hostile to it? Does she feel her difficulties are linked to Aspergers or does she feel others factors are to blame or does she simply feeling low in confidence and self-worth? I only ask this as much progress can be made when helping young people feel more confident about their condition and to see it as a difference not a disability or problem. Can her counselling and speech therapy continue online via video link or is that not an acceptable format for her?

Hi, initially her attitude was denial and she couldn’t see how much her Aspergers affected her. She didn’t like being labelled and felt her difficulties were because of other people’s actions. As she has got older she is more accepting and I try to encourage her uniqueness and her way of thinking as a strength. How she views the world is amazing, she’s see so much more detail and has a desire to understand things on a much deeper level. It’s so sad that she is unable to make friends, get on a bus or walk into a shop independently and yet her knowledge of astrophysics is remarkable and she has taught herself to speak Japanese fluently.

Unfortunately she doesn’t want counselling and speech therapy online despite being offered. It’s not her usual routine and so difficult to accept.

Your daughter clearly has much to offer. Anxiety seems to be the major obstacle so enhancing skills in managing this is essential. She could be encouraged by reading the experience of others on the spectrum and to focus on particular relaxation techniques that appeal to her. For many on the spectrum, it is the difficulty in negotiating a world that is not only unpredictable but also confusing when there is difficulty in the interpretation of the behaviour of others. Your daughter has achieved so much in learning despite her struggle with the everyday.

Hi Rainbowchaser,

I'm very sorry that you and your daughter are in this situation. It's very difficult when people on the spectrum grow older because they "age out" of certain support available to them, even though the need for support is very much still there, as Autism is a life long condition.

I'm sorry you've tried contacting the Autism charity and haven't been able to get through to them. I'm guessing this is the National Autistic Society.

I can only guess that they're under a lot of pressure at the moment due to the pandemic and, consequently, more people affected by Autism are needing support, which may be why you're not getting through. When checking to see if they've emailed back, it may be worth checking your junk/spam folder just to check you haven't missed a reply from them as a new email can occasionally get misplaced to this folder.

I don't know whether it's their main head office you're contacting or not, but you could see if there is a local branch for this specific charity in your area - if you haven't already - or you could try searching for a smaller, local Autism/learning disability charity in your area.

Have you tried contacting Citizen's Advice? They can advise you on what you and your daughter may be entitled to benefit wise and their main website has some good information and will be able to guide you to your local branch. citizensadvice.org.uk

If you can get yourself registered as a Carer, you may also be able to get more support for yourself. It may be worth speaking to your GP about this. You could also try speaking to your GP about getting your daughter referred to the Adult Community Mental Health Team, seeing as she was already under CAMHS.

Mind, the UK mental health charity, has some good information on advocacy. mind.org.uk/information-sup...

Mencap, a learning disability charity, may also be able to help you, and you should be able to find them after an internet search.

I want to wish you all the best and I hope your daughter will be able to resume her therapy soon and you can both get the support you need. Your daughter is very lucky to have you.

Take care

Xx

Thank you for your reply and advice. I agree when our children become adults all support stops and parents are left to deal with everything. I always felt the issues she would have as an adult were never really dealt with as a child. She was diagnosed with Aspergers at 11 and was very difficult as a child with anger issues, self harming and suicide attempts. We had family therapy to help deal with her behaviour but nothing really for her alone, that’s why I paid privately for counselling and speech therapy. She did see the GP regular but due to covid that has stopped. I have had previous experience of adult mental health services with my elder daughter and to be honest they were not very good. She couldn’t get appt to see them and they offered no counselling just changed her medication. I have looked at local support but there isn’t much in the area we live. I have checked my spam folder daily for a reply from NAS but nothing, I guess I will keep trying to get through on the phone. The citizens advice idea is worth looking into so I will give them a ring/email. Also will look at Mind website thank you.

If she's worried about engaging with online therapy, it might be worth exploring books and self led online courses?

I had a lot of success with both online CBT with Silvercloud and the book Parts Work when struggling with anxiety as an autistic woman myself - neurotypical therapists have never really helped me, as they have tended to make a lot of assumptions that just don't apply and it is stressful correcting them.