Hi everyone, my name is Louise and I live with my son David who is 29.
im new on here so apologies if this subject has already been discussed, there's a lot of stuff to look at.
David has never accepted his autism diagnosis and thinks that he can manage without help, but left to his own devices he does nothing. He won't engage with his GP, social worker and various other organisations that have been involved. I have been told that as he is over 18 and deemed to 'have capacity' to make his own decisions that nothing can be done. David is depressed and takes his anger and frustration out on me every day. I have health problems and suffer from depression and anxiety as a result.
Has anyone else had this problem and did they find a way round it'?
thanks in advance
Sorry this sounds so hard. So would you say motivation is the problem? Is he working?
Would he be at all interested in a peer support group for depression, rather than for autism?
I hope other parents can contribute here. If you add 'tags' to the post, it may be easier to find.
Hi Cassandro, David won't accept help for autism or depression. He does has a job,but the placement is breaking down as he won't get out of bed to attend. He won't see his GP and when his social worker visited yesterday, he ran off.
thanks for your reply, I really appreciate it
I'm still wondering why he's resisting the diagnosis or help. Could it be that he is ashamed of it? Or does he not relate the help offered to the way he thinks of his life problems? Or does he just not get on with any of the professionals?
I don't know anything about you, your son, or your relationship, but I am autistic. Maybe he's afraid of the future, or can't visualise a good one for himself. As his mum you're probably already doing this, but can you help him visualise a realistic future that he would like?
Hi Cassandro, I tell him constantly that everyone needs help sometimes and he just needs a little bit to get him started then he can get on with his life but, he wants to do it all on his own which means he will achieve nothing. David is fairly capable but does have some learning difficulties and is vulnerable. He has unrealistic expectations for the future, for example, he is studying level 1 maths which is 2 levels below GCSE and he thinks he can go to university with this. I have told him that it isn't possible at that level and he just gets annoyed with me and says I know nothing.
I think David is in denial to a degree as he used go to special schools and had to go to a residential school for challenging behaviour for a few years. I think he just wants to be like the people around him who went to uni and have jobs and relationships. David would love a girlfriend but is obsessive around women and doesn't understand boundaries.
I try my utmost best but I am just his mother and I don't always know the best way and I am tired and depressed. David has complex needs and I feel he needs to see a professional who can somehow make him come to terms with his autism and find happiness. But because he is deemed to have capacity, he is allowed to refuse this help and I don't see any way out of this.
Hello again Louise. It sounds like you're doing the right things but it's difficult. I wish I could help more. You may like to particularly look around the Parents and carers forum here to see if you can find related stories. I'm also going to do something unusual and try paging some people, Emma, Kerri-Mod I hope you feel free to join in this forum wherever you feel like, and other autistic adults read your messages too.
The Mental Capacity Act has inbuilt safeguards to stop it being overused, but I can't see a way it would help here.
Random thoughts you've probably already considered:
Hi Cassandro, thanks very much for the link on demand avoidance, I've never heard of that before and the description is David to a tee! It was great to read that it is something he might be able to get help for. I'll ask his social worker but she is just part of mainstream services and admits to not having much knowledge of autism. The community learning disabilities team who have assessed David in the past won't do it now as they are short staffed and only accept people who's IQ is 70 or under. I'll also try my GP and see where it gets me, it's a start at least.
i have no extended family or friends that can help, or rather I do but they've always kept their distance. They are happy to give advice but have never helped me directly with David, no doubt because they don't want to get too involved and spoil their lovely cosy lives. My dad, Davids grandfather has always helped and in the past David would stay over at his house and give me a break but David won't do this anymore. My dad is a widower and also on the spectrum and his house is very dirty and untidy.
David has occasionally gone to the job centre but they just offer him supported work schemes for people with special needs and he doesn't want that.
Ive told him about some famous people with autism and also about a friend who has Aspergers who went to uni and needed a support package in place as she struggled to look after herself but managed the study part.
Its all been to no avail up until now but I'm very encouraged after reading your link. Thank you so much for sending it and for all your advice, I really appreciate it. You've been more help than...Well anyone! I'll let you know how we get on.
Sorry, late ping response Cassandro- been away a few days! I agree it sounds like demand avoidance, my also-autistic other half is much the same sometimes. Geordielou How would your son feel about joining this forum and having a chat with a few of us adults on the spectrum? It might help him feel a bit more connected with the world and many of us have also struggled with the same issues, so he might be more willing to accept advice from those of us who have been there.I do understand to some extent his reluctance to accept help from professionals- I found the job centre extremely frustrating as they would assume what I was and wasn't capable of "due to my autism" rather than listening to the person who knows my brain best (me). >> I got a proper DEA (disability employment advisor) who was really helpful and supportive for the short time I met with him (got a job almost immediately after I was transferred to him) eventually though- they are out there! There's often a very negative spin on autism, it's very hard to deal with people who seem to think you're defective- another reason I think he could do well connecting with other autistic people. Re. University, I agree with you that he would struggle to get onto most courses without higher level qualifications than he currently has, however if he has a look at the Open University they often do not ask for prerequisite qualifications (he'll still need the skills to finish the course, but fewer hoops to jump through just to get on the course) and also provide 'access modules' he could take as a 'taster' to see for himself where he might want to brush up on his skills before going for the full degree. A lot of us aspies (me included) find it very hard to learn in any other way except "by experience". I still really struggle to accept advice over trying things out for myself, even though I know full well it makes life harder for me!Re. socialising/dating, I would definitely second Cassandro and suggest he join local groups related to games/activities he enjoys (or thinks he may enjoy). I met my partner and most of my close friends through a board game group. It does really take the pressure off when the object is to do the activity you enjoy with socialising on the side, plus it increases the chance of meeting people with similar interests and general social chemistry. Hope that helps! x
Hi Emma, thanks very much for your reply. I've just asked David if he would like to talk to people on here and to my amazement he said yes! Whether he will actually do it or not is another matter but he didn't reject it outright which is promising.
i haven't heard of a DEA and one was never suggested for David but I will definitely look into this. When David was at school he saw careers people but now he's over 18, no one seems to care whether he has a job or studying or anything.
It sounds like David would hugely benefit by talking to people such as yourself. I will try hard to encourage him to join here, hopefully this will be the start of happier times for him. Thanks again! X
That's great ^^ hope so too! He's welcome to ping me into any thread he may start if he likes (@Emma) I too have noticed that you have to fight a lot harder for support once you hit adulthood, unfortunately autism is still something very much associated with children in the general public consciousness. :/ People often don't seem to realise that autistic kids grow up into still-autistic adults.Definitely ask about a DEA! Good luck to you both x
Hi Louise, this is just a thought and you may of already tried this but, if he wants to go to uni, talk about which subject he would want to study, ask questions about it like, why he wants to study this subject, engage in a positive way about it and then suggest that he can get some help to attend uni. This may mean sitting GCSE or A-Levels but its a positive start to accepting help for something he wants to achieve.