Woken up feeling sheer terror about autistic dd’s Future!!

[Tarchie]

Just that really. I’m posting on here for more traffic but I am having such a huge anxiety attack this morning which I woke up with. My teenage dd is autistic and completely isolated socially. Our little family is where life stops and starts for her and it’s heartbreaking to see. She doesn’t go to school because she was bullied there and so school doesn’t feel safe to her. By default, I’m now totally isolated myself as we’re in the house most of the time because any suggestions I make she completely panics about. I’ve been told by a CAMHS “professional” that I just have to face the fact that one day I won’t be alive anymore and my dd will have to cope with life without me. This was told to me more than 3 years ago but those words are like a knife in my heart.
I know that my darling girl will be on her own one day and the thought terrifies me. I watch the news and there’s so much sadness, war, crime that it overwhelms me when I think of the world my vulnerable girl is growing up into. The local authority funds limited home education for her but even this stops for the summer and her world becomes empty once more. I feel sick, keep running to the toilet, am constantly crying this morning and I don’t know how to cope with the rest of the day, let alone the rest of my life. Please help with words of kindness or encouragement. We have no-one.

Please post in SN as well Tarchie there are so many lovely people there who understand completely. www.mumsnet.com/Talk/special_needs

I'm really sorry you're having a rough time. Let me reassure you that there are lots of people out who care and look after one another beyond family ties. I volunteered for years in a really lovely organisation supporting adults with autism and the staff really cared and went the extra mile with support for people. Many strong friendships were formed there and people with autism supported one another. There will be people there for your DD after you are gone. But at the moment your anxiety is making things hard and probably making the world look like a darker place than it is. Maybe you could use some support with that if you don't have any at the moment? Perhaps from your gp. Also it sounds like you're doing a brilliant job caring for your DD despite insufficient support at the moment. Well done. You are very strong.

You need to do what you can to equip her for life without you. You can't only protect her. My child is 17 and also autistic, would also isolate themself for preference. Find the things she is interested in and do them, a little bit at first, at quiet times of day, for a short period and build it up. For example: goal, to buy a new top. Will go at 11am on a Tuesday, quietest time in shop, to H and M. Aim to try on 3 tops and choose favourite one. Will leave immediately after.
My boy is doing work experience this Summer. I will begin by taking and collecting him, then we'll do it on the bus together, then he'll come home on the bus himself and by the end of the two weeks I am hoping he'll be going both ways on his own (just 1 bus, simple route). He has to see the purpose in things, he wouldn't do travel training "just because", but he will have a go if it's in order to get home from work....

Pls don’t feel like that. I’m aspie and I’ve coped.

Can you take your daughter to activities that suit her traits. For me that was things like archery and clay pigeon. All that calculating of angles and speeds to hit a target.
Or if that’s not her thing, try dog walking with the dogs trust.
Or would she like coding club?
Somewhere she will meet like-minded people.
People with autism are wired differently but that doesn’t mean necessarily that we can’t cope. I have a career in IT and half the guys I work with are on the spectrum.

Do you have a life insurance policy? It might make a difference in where she is placed if she has an income after you are gone. You might be able to reserve her a place in a "good care home" rather than trusting the government representatives to look after her best interests.
It may be different under your health system, but that is what parents of handicapped children are advised to do here.

Don't judge her isolation by your standards. For you it may seem sad, lonely and heartbreaking but her it may well be heaven. I'm autistic and have very little life outside of my home and family and that's the way I like it. The biggest hurdle for me was accepting that it's ok to be on my own rather than constantly trying to conform to society norms which made me miserable.

Thank you to everyone kind enough to reply. Your words of advice, encouragement and kindness are so appreciated. It makes me feel as though at least some people care.

Hi op, I am a support worker for adults with additional support needs. I love my job and treat the service users like my own family. I understand how it feels worrying about your child when you leave this world but I hope it helps to know that there is people out there that genuinely care.

Do you have access to a local carer's group OP? Apparently they are a mine of information and support and know who to ask for whatever you need in relation to a lot of needs, I've not ventured to ours as yet, but have heard very good things about it.

Something many people forget about kids with AN is their emotional "age" can be far lower than their chronological age. About two thirds is a rough rule of thumb. e.g. If she's 15 and you consider her to be emotionally around 10, what would you expect her to comfortably be able to do in terms of interacting with the outside world?
Don't compare her to her peers when you see what they can do in their daily lives, consider her emotional age and try and work to that for her and see if both of you are more comfortable with that.

You don't know as yet what she's capable of doing in adulthood. Probably quite a bit later than her peers, but please do let her have the chance to mature at her own pace, rather than thinking because she struggles with something right now she will always struggle with it. Some skills she will master, others she won't, but you'll be pleasantly surprised along the way, I'm sure.

This thread has lots of links to firms who welcome autistic people, worth bookmarking for future use www.mumsnet.com/Talk/_chat/3636028-So-ashamed-and-embarrassed?pg=1