Aibu there’s not enough support for Autistic parents?(84 Posts)
Aibu that there’s not enough support for autistic parents or even just autistic adults?This is NOT parents or carers of autistic children - this thread isn’t about you, sorry.
I’m really struggling with my 9 month old baby. He’s a lot more demanding and clingy
than my 8 year old daughter was. He wants held constantly, won’t sit and play, refuses to crawl etc - and why would he if he can be held all the time? My partner works long shifts with the NHS and we have no family support.
Without going in to too much detail, I’m struggling to keep up with the demands of two kids, yes just like a normal parent but unlike a neurotypical parent my brain isn’t wired the same. My ability to cope with stressful situations breaks down far quicker and stress kicks in far sooner. I need wind down time alone each day which I’m not getting and haven’t had since the baby was born. Eventually my mental health with start to suffer and I will go into full shutdown.
There are no services available to help autistic adults. Plenty if I want to get into work or volunteer, or be befriended by a dogooder who’ll make social small talk to pass the time or even courses to learn social skills and how to make toast (which is so patronising). There’s nothing practical for adults and even less for adults who happen to also be parents. Much of the support required is the kind of thing that would fall to family and friends if I had any... but I don’t.
I must stress this is not PND but if I pretend to have PND I can access loads of support. I wouldn’t do this but it highlights how ridiculous the system is. I do have access to perinatal mental health team but they have no idea how to deal with people like me because I do not have a mental illness and so they leave me on their books but not actively getting support from them. I also do not have a learning disability so there’s no support from that side either. Social work only have MH or LD adult teams and as my children are not in any danger or need of support themselves, children’s services won’t get involved either.
I know from reading mumsnet that I am not the only autistic parent who is struggling and needing support. How do others manage? What kinds of practical support should we adults be asking for from services for ourselves?
Again I feel I need to reiterate this is about the autistic parent and not autistic children, there are plenty of threads about them.
be befriended by a dogooder who’ll make social small talk to pass the time
To be honest in some ways I'd even appreciate this being available to me at times just so I could practice my social skills and actually be able to have a conversation about what I wanted for a change. There's effectively no support for autistic adults round here, except for one evening a month for a group session (sitting round in a group of strangers trying to talk - so well thought out!).
I can appreciate how you reach your limit that much quicker - I would really struggle to be a parent I think because my threshold just isn't far enough away. I'd be either snapping at the slightest thing or falling apart. No answers but I do feel for you.
I'd like to see free counselling sessions available for autistic adults - not necessarily weekly, just someone trained in autism to talk to about the everyday stuff that seems so tough at times. The stuff that NTs talk to their friends about (or don't experience in the first place). I could pay for counselling but it adds up quickly and most counsellors aren't trained for autism and want to be helping you on a particular issue rather than just listening to you vent about life generally and helping you cope with the stuff that everyone else finds so easy.
Social services could probably offer help?
I think the need has to come from the individual symptoms and not the condition. Many would find the implications that they will find raising children more difficult insulting. So maybe play based sessions, bonding session, dealing with depression which should be highlighted by need rather than an underlying condition through the health visitor and social services.
Which aspects of your life would you like support with?
Surely the befriending system would be a good way of getting support?
It’s a hard one but I am not sure what support you are expecting really?
What help are you looking for?
What were your plans for coping before you got pregnant?
Babies are stressful for most parents.
I think you need to talk to your perinatal mental health team. Saying things like your 9 month old ‘refuses’ to crawl does sound like you need some mental health support.
Not sure that having PND does necessarily lead to loads of support. Maybe it depends on the area you live in. Health Visitors and Homestart are there to help any parents of young children who are struggling for any reason, not just PND. Also Barnardos.
Have you spoken to your HV?
It would be nice if people thought 'person with autism - let's ask them if they need help' rather than restricting automatic offers of help to certain other categories. Autistic people often don't think to ask for help - I tend to assume that help isn't available because if everyone else seems to cope then I'd be expected to cope too. If someone said 'Nike, how are you coping, is there anything that you're finding difficult' then it's a different story.
Is it more 'childcare'you are looking for as opposed to support for parenting?
I agree. There isn't the help for Parents with any Additional need/disability, that there should be.
I resent your "do-gooder" comment. many are people (like myself) who are parents of Autistic children(now Adults) and have worked in Social Care etc that want the services to be available that should be.
Those do-gooders shaped all of the services that we have, right back to just making sure that disabled children survived.
What do you do as Voluntary work, or work in general, Political change? Or do you just want other dogooders to do it for you?
He wants to be held because neurotypical children are comforted by physical contact. He's not "refusing to crawl", he's asking for comfort.
I'm an autistic parent and I've always had a lot of support, sometimes too much! I'm under the perinatal team now and I see a psychiatrist once a month and therapist once a week, plus a weekly arts group which is just for people with severe MH issues. My midwife care will continue for 28 days after birth and I will have ongoing support for a longer period from the health visitor as well. I've been offered a SS referral but I've found them unhelpful and intrusive in the past, so I turned it down. A lot of the support is offered under the mental health category (as my autism has damaged my mental health severely). I also get PIP at the enhanced rate and ESA and I can spend that on support if I needed to (although as I have enough therapy via the NHS so I generally save it).
We do have befriending services here (for any mum who needs support) and various groups, but I don't find them helpful for the same reasons, I don't feel the need for social contact due to my autism.
I am lucky as I have family nearby, who are the most helpful support for me. But we did have to make a decision to move closer to family when I got pregnant, and that's meant making compromises as it's a higher cost of living area.
I also need a lot of time alone and I have a lower threshold for stress, so I have only had one child at a time (I'm only pregnant with my second since my first dc turned 18). I know I couldn't cope with 2 dc as the demands would be too great.
What is it you actually require from a service though? Is it just the actual time alone to let your brain rest? That could be covered by arranging some sort of childcare to give you that time to yourself. Easy peasy.
And there is practical support out there. You've listed lots of them in your post. Just because you feel they wouldn't benefit you personally does not mean that they do not benefit other autistic adults.
There is support to be found. Granted, it probably isn't enough or properly funded or even in the form you might expect.
You have to ask. Talk to your health visitor, children centre OR GP as a starting point, they can all make referrals.
Don't disregard the "do-gooders". For example you could have a person from home start come in and help you by holding/comforting the baby whilst you sit in another room for a break from the baby holding. You don't have to make small talk.
You do have to know what you need and want, then ask for it and then not judge who it is who provides the support by seeing them as a "do-gooder".
Also as a side point those courses you perceive as patronising to help people learn skills for independence (making toast is after all a skill!) are useful for some people just not relevant to your needs.
But what would you like support with specifically? And you chose to have children, how do you think you can work on coping mechanisms?
You really do have my sympathy, but it sounds to me, reading your post, as though your needs aren’t severe enough to qualify for extra support from health or social services.
You seem to be very muh on the high-functioning end of the spectrum and are probably deemed able enough to seek support for yourself, as indeed you are doing by asking here. How about joining a parenting course or a playgroup? You will pick up lots of tips and support from other mums. Would changing your childcare arranements help to give you the wind-down time at the end of the day that you need? Can your DP reduce or change his shifts? I think you might need to look to your own resources to see what you and your DP can do to improve your situation and wellbeing.
Very best of luck to you
It’s really fucking hard. Walking to school yesterday, in the rain, the cars were making that hissing noise that they do on wet roads. DD was talking incessantly & pulling on my arm. I just focused on getting her in to school but wanted to scream / cry / have a total meltdown. Then after dropping her off, and being so relieved that I could finally put headphones on, feeling so guilty that I just wanted to get rid of her. She was so chatty & happy & affectionate I feel like I’m just constantly fucking her up.
It is tiny stuff like that, that happens all through the day. I don’t know what kind of support would help though. It’s not even me that needs the help most, I can handle it, I just worry about the kids. I can just see them in therapy, 10 years from now, talking about their emotionally distant mother. I found myself saying “mummy can’t talk while the windscreen wipers are going” last week, then later thought, christ, I sound fucking nuts.
Maybe autistic adults should design and run support services for autistic people. Really no need for nt people (do-gooders or otherwise) being involved at all.
I hear ya. There isnt the help in my area for autistic parents and without my family and very understanding dh I'd be committed probably! Things like executive function (cleaning is a big one for me) i struggle with. Have you ever tried explaining why your disability (which is not physical) requires a cleaner. People just judge you as a lazy arse. Or like yourself, wind down time.
It's not bad to appreciate a break.from your dc. It is fine to be thankful when you drop them off so don't feel.upset or guilty.
Put the nine month old in childcare some hours every day.
If you can persuade ss of your needs you might get some funding
Or use your own finance to do.this.
Get them to a childminder for a few hours per day to have a break.
Even neurotypical parents struggle with 2 young kids and no support.
Hairycoo you've hit the nail on the head.
I'm in the process of starting to be assessed but I do understand how you feel.
I can't give any advice (it would be like the blind leading the blind) but your not alone.
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