Aibu there’s not enough support for Autistic parents?

[Autisticappropriation]

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.

I was in the middle of typing a very long response when my battery died. It’s probably a good thing as it wasn’t polite and was very ranty at some of the ignorant arseholes on this thread. I am so angry at the neurotypical ignorance displayed here when one of my tribe has reached out for help. Too angry to reply without expletives and insults so i’ll Leave it there.

Struggling autistic parents you are not alone & you are not at fault.

when one of my tribe has reached out honestly! Being ASD is not a tribe.

I think one of the reasons many have reacted negatively to this thread is that the whole premise of the post is ‘I need society ie nt support for my stress from a choice I made’I need this and I have more stress than any other NT person.

If you’d come here with a more reasonable ask, saying ‘I am finding this hard, some is related to my ASD, I know this is mainly up to me and I’m looking for ways to cope better.’ I think that would have a shown a less entitled attitude and invited a warmer response.

However it is simply not true that being autistic makes parenting more difficult than others. We are complex and the dividing line is not clear. There is no evidence that an ASD parent has more stress than other mums. Personally I would be handing out my taxes to support mums on low incomes. There is plenty of evidence that they do experience more stress than others.

I’m on the spectrum too. It’s not all about everyone else accommodating ‘us’.

Op there seems to be a few parents in similar situations on here. ...why not pm a few of them and start a supportive thread on a board that's less vicious than AIBU ? I know it's RL support that you're craving but online support might help!

And I'm amazed by how many people missed the fact that this is OP's second child. So no need for snide "what did you think being a parent would be like?" comments

I would second HomeStart. If you self refer they would be able to give you a break once or twice a week.
Also a session or 2 at nursery might be an option if you can afford it.
And if you have a partner around in the evenings maybe you could get them to take over with the bath and bedtime routine so you can have some time to yourself. Dh was always keen to do this anyway after having not seen the children all day.

My god Wintertime you’ve got a cold heart. It is not mainly up to the OP that they’re having a hard time, it’s not a fault finding exercise, there is no blame. A mother is struggling, we should not be pointing fingers and blaming her. We should be offering an ear to listen and suggesting ways in which she may access support.

You may be “on the spectrum” as displayed by your inability to see someone else’s point of view (and there was me thinking the absence of theory of mind claims were bullshit) but your claim there is no evidence that autistic mothers experience more stress than NTs is absolute rubbish. One can extrapolate from the wealth of data on the prevalence of stress and anxiety among autistic people compared to allistic people that this very same stress will exist whether or not they are parents. It will not just disappear when they become a parent so it would be a very short and not unexpected move to say that an autistic mother will probably experience more stress than a non autistic mother and that this disparity in stress experiences probably existed prior to parenthood. If the evidence doesn’t explicitly back it up it will be because very few studies will have been undertaken on autistic mothers. Yet.

It may not be your experience because, guess what, everyone is an individual but from most of the autistic people responding on the thread here, aside from you, the message is clear - they experience extreme stress and lack of support. I’m so very pleased that you can go skipping through parenthood throwing out flowers for the less fortunate and singing tralafuckingla on the school run.

I find your anger towards a struggling autistic mother odd particularly if you are indeed autistic yourself. Blaming someone for making a choice that has caused stress, a stress you have pointed out all mothers experience, then saying tough shit, doesn’t make you sound like a very nice person at all. There are no claims for NT society to sort out the OPs problems, she asks if there isn’t enough support for autistic parents, it’s clear that there is not- be it from other autistic parents, given your response, or non autistic parents.

And as you seem to be so concerned about those in poverty, with a statistic that only 15% of diagnosed autistic people have a job, there is a far higher likelihood of an autistic mother living in poverty... will they be worthy of your hard won sympathy then?

I’m not blaming the OP. I’m disagreeing that she has priority need for external state support.

In an ideal world we’d all have some access to breaks. As it stands, and resources are scarce, I again stand by my opinion, based on what we know is the biggest stress factor, poverty. I do think they come first.

I’d happily share some of my own coping strategies about parenting, my own self help, but as I understand it that’s not what the OP is asking for?

Where does she claim she has priority need for state support? If people with mental illness or a learning disability or even old age are entitled to get state support, why shouldn’t autistic people? Why are they less worthy of state support than a depressed mother or an anxious mother? OP has already admitted she could access mental health supports which have been made available but that are inappropriate- doesn’t scream out a perception of priority need to me.

I shall quote directly from the op “How do others manage?” That sounds to me like a request for coping strategies and advice. Perhaps read the OP again without your heirarcht of hardship in mind. We do not know that the OP isn’t living in poverty, there is no mention of family income... and as stated above with low employment rates there’s a higher chance she may well experience poverty.

Since my boys were diagnosed with ASD it's been assumed DP and I have ASD too, though when my kids were born we just thought I got depressed and exhausted easily (now diagnosed as hypermobility/EDS and fibromyalgia).

What helped me was certain HVs and welcoming SureStart centres - I went to a breastfeeding group long after I needed support as the staff would get toys for my 3yo and he'd be happy and safe while I could doze on the floor. One HV who was great would ask if I wanted to meet up and give feedback on new procedures and forms and generally got my issues. GP was good too at confirming what was 'normal' hard parenting and what was too much pain, worry, etc. There were however a lot of HVs who were judgemental and patronising, not to mention their assistants who pretended to be HVs.

But most useful were my friends who I made via the Internet and conventions etc over the years. 15-20 years later pretty much all of us have a child or two with a ASD diagnosis. Chatting online with them, and paying for childcare regularly, has been key. Back when dc1 was small and I was hallucinating from lack of sleep, the GP ordered me to "phone every half-sane person you know and tell them you need help, even if you only trust them to rock a baby under supervision". As a 'village' of people we manage pretty well but the first couple years were tough.
I did find that the more I read about child development and psychology the better. Knowing that toddlers go through phases of defiance and repeating everything because it helps them learn language etc makes such phases so much easier to deal with!