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Parent of adult child with ASD looking for support

Daisy50Daisy50 Member Posts: 2 Listener
edited June 30 in Parents and carers
Hello I'm new here.. I hope you are all well in these strange times. This Covid situation has made me reflect on things, one thing being how isolated I have always been as a parent of a child with ASD. My son is now almost 28 years old and he only got a diagnosis of Asperger's a few years ago. He was on the waiting list for years waiting to get assessed by our cash strapped mental health services. They can give a diagnosis but can offer no support from then on, which is pretty dire.. he goes to a local charitable organisation for support but that's all there is. I've been a single parent with him since he was a baby and I've never had a real partner since then , so I have always been very alone with him. As he never made any friends at school I never got to know any of the other parents. He moved primary school 3 times due to getting bullied. The teachers offered no support,in fact one of them even called him 'weird' to my face. Back then Asperger's etc wasn't heard of. He got bullied at senior school too , and also by his father who he has now disowned for being abusive to him. I have no contact with his father either. I got so much crap from people when he was little due to his odd and sometimes rude behaviour. It was awful and I was so isolated and alone I became very depressed.  My son now lives on his own and is very independent in lots of ways , but he struggles a lot dealing with people & I think a lot of this is due to the bullying he has suffered. I don't have anyone to talk to who understands, as even to this day I've never met or become friends with any other parents of children with ASD. So I'm glad I found this forum . 

Replies

  • Firefly123Firefly123 Member Posts: 522 Pioneering
    Hi I have 3 young adults with autism and other complex needs. Most people with ASD struggle with people my boys worse than my daughter.
    I totally get the isolation as so busy dealing with their needs ours take a back seat. Welcome to the community. Many of us understand the struggles you faced ☺ 
  • EricaMcDEricaMcD Community champion Posts: 26 Courageous
    Hi,  I know so many people locally in your situation.  I don't know if you know of a woman, Temple Grandin, a professor in Colorado, USA who has Asperger's.  She has written quite a few books, given at least one TED talk about how her condition affects her and those with ASD and strategies she has learned and used to excel as a professor and in her personal life.  Welcome to the community.   
  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    Hi, I am disabled and the carer for my son with autism. There is a lot of support but because of the timing of his diagnosis probably you slipped under the net. It's a shame about your experiences of having your son being called weird etc. Would be join an adult support group near him? Do you still do some aspects of his care? Maybe you could offer to go with him the first time? Some areas have meet up groups for adults with asperger 
    A laugh a day keeps the psychiatrist at bay. 
  • Daisy50Daisy50 Member Posts: 2 Listener
    Hi, nice to hear from you both. Yes I've heard about temple grandin and the wonderful work she does with animals! My son goes to a local charity for people on the autistic spectrum, he has a support worker there which is really helpful . They have just helped him successfully apply for PIP.  He lives on his own independently I don't have to do anything for him in terms of day to day living tasks but he just really struggles to interact and deal with people. Although he talks to people online he never has friends in real life and has never had a partner. But he doesn't seem bothered about this so that's ok. 
  • donnap79donnap79 Member Posts: 31 Listener
    Reading this first post reminded me of what I use to feel every time I took my children to school but my boys are now 18 and 17 and diagnosed and parents use to be rude to me about my boys too because of there hyper behaviour and how one use to encourage the other but they just seem to have a way of bouncing of each other but when it came to calming them down it wasn’t easy and parents use to look at me like I was an terrible parent n wouldn’t let there kids play with my boys now they are in collage and doing ok I know people use to talk about them and me behind my back at school I didn’t talk to mums it use to make me miserable but I didn’t let my kids see that tho 
  • EmmaR_ScopeEmmaR_Scope Scope Posts: 28 Courageous
    Hi @Daisy50 Welcome to the community ! You should fiind lots of people on here who understand, do pop into the coffee lounge there's alwasy someoene up for a chat!.
    My brother was diagnosed  with ASD as an adult, I spent my childhood and teens being the big sister to the 'weird' kids who wouldnt wear shoes or long trousers, so can understand a little about how things have been for you.
    There are some wonderful voluntary organisations that support adults and young people.
    Does he enagage on any forums?

    Emma Rose  - Scope Activities for All-  support and advice for parents and professionals on inclusion and children's disability issues
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