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.

but that's the point, no they are not. We do not have enough support (or any support at all!) in this country. It starts from the moment women give birth in unsuitable conditions

What does that have to do with whether parents who have autism should get support?

I just don’t think you can measure levels of stress and say it’s more for ASD so there should be more support. Women in domestic abuse situations, whose partner has cheated, who are very poor, or isolated, so many factors.

Probably the highest is the inequality in money, those poorer areas and on lower incomes generally have higher stress which is why maternal and early years support like Home Start is concentrated in those areas.

It has to do that there is NO support, and things go from a bad start to worst because of the lack of support.

Surely you can see that a parent with autism will suffer even more due to the lack of support from the start, and autism will only make it even worst?

What were your plans before you got pregnant? What support systems did you put in place?
YABU to think your stress is more valid than anyone else’s. You chose to have a baby knowing you would struggle.

Yanbu

I desperately need support but there’s nothing. I can’t afford more childcare and that’s not what I need. I need help in the home or with taking the kids to stuff as transitions are really hard for me.

I love my kids but I regret having had a second. I just about coped with one but having two has broken me.

OP having kids is a choice and I with all the disability cuts atm it's not really fair to prioritise someone who made the CHOICE to have kids they can't cope with. It's not compulsory and you already had one. I have health issues and would never have kids unless I was better because of this. I wouldn't have kids then expect the government to step in because I can't cope with them.

Some of the answers of this thread is why i keep my asd to myself. 'Just get over it', 'manage your own needs','should have thought about that before'. These things wouldnt be said to someone with a physical disability but fuck me, its only autism.So much ignorance.

I suspect (as an Autie myself with many Entie) friends, that I experience sensations and stimulae quite differently to NT people. I seem to do much less well in filtering competing stimulae, or will notice the ‘wrong’ thing. I’m very cautious about driving because of this, and won’t drive with more than one child in the car. All of this adds a layer of complexity to life with small children which I deduce from observation that NT people don’t have. They may well have many other severe challenges, but that is not one.
One thing which is also interesting is that many NT people seem to find it hard to conceptualise the existence of different neurologies. I can imagine that’s something which brings its own difficulties to parenting.

@Autisticappropriation, homestart were an invaluable service for me and they might be helpful to you if the service is in your area.

I got a referral through my health visitor when my twins were about 5 months old. A volunteer is assigned to you to help with the little ones. They aren't there to do housework etc but can look after, play with, the children while you do other things. I would leave mine with the children and take a shower, clean another room in the house.

Even if it's only a couple of hours once a week, it was so helpful for me to manage the rest of the time, knowing that my HS worker would be round again soon.

I'm an autistic parent of an autistic child. I haven't had any support but I don't really know what kind of support I could receive.

The "do-gooder" thing you mentioned could actually have been quite useful for me. I struggle very much with conversation and small talk, I don't know how to make friends. I found baby and toddler groups really difficult. I'd have quite liked that kind of support I think. I didn't realise it was available. I don't think it's very nice to sneer at them as "do-gooders" in that kind of way.

A friend of mine managed to get funding for childcare for her baby, she's autistic and her GP recognised her need to have down time. Might be worth a try OP? I'm neurotypical and I know it's hard having kids but I imagine the problems must intensify with the challenges that ASC can present.

On another note I find it interesting that a lot of neurotypicals find it so hard to put themselves in an autistic persons shoes yet we label autistic people as having poor empathy skills...

hi, I'm sure I am on the spectrum and have three children (close in age) so can sympathise. Looking back (my children are much older now, teens) I would say one of the problems was being unable to think out of the box, and hyper focus.
So now, with your rain and windscreen problem I would think about maybe giving my 9 year old a pair of headphones playing classical music (not too loud) for that journey and concentrate on holding her hand, try and get her used to talking to you when you can hear her properly (I hate background noise when I talk to people, and flip if people have televisions on or radios in rooms where I am trying to talk or chat or concentrate)
For your little one, I would try and turn what is exhausting and wearing into a fun experience, turn it round in your mind; remind yourself how attached he is to you, relax into the experience, how it won't be long before he is driving you insane by crawling or wandering into everything
Often reducing the other things in my day that stress me enable to cope with those things that are stressful but unavoidable, ie talking to my children, journeys, lots of social interaction. Then it is fine. But I have to pace myself and then I am a lovely mum to my children (I hope)

Anger and frustration are part of the course when you have a spectrum condition, as most people just don;t get it, and are not particularily understanding but remember you are the best mum for your children, not anyone else, and you just have maximise all your talents (my talent is for being quite attentive to my children in a way that only someone with hyperfocus can be, and for not caring what other people think most of the time, which makes me independent and unjudgemental and thoughtful; I'm sure you have many many talents as a mum that lots of people don't)

HTH, also had no family or friends to help me so can send spring ones!

I found baby and toddler groups difficult in a way, but I loved them too, as I could see my baby loved them, and it was such a relief to be out of the house. Exercise (in the sense of going outside in fresh air) was important to my mood, and walking with the baby always cleared my head if I could come back to peaceful retreat afterwards (even if with noisy toddlers)

Just keep remembering NOT to judge yourself harshly, or compare yourself to others and be happy to be you.

@hairycoo Actually I think these things would be said to a parent with a physical disability who had a child knowing they couldn't physically take care of them. A parent who physically couldn't pick up a crying child or change a nappy or has to spend most of their day in bed needs to work out what support they need/will have before they have children - not afterwards.

You only have to look at the thread about what would you change about your childhood to realise the damage done by parents who aren't well enough whether through mental health, alcoholism etc Parents who have hefty needs of there own don't always have enough left over for their children.

On another note I find it interesting that a lot of neurotypicals find it so hard to put themselves in an autistic persons shoes yet we label autistic people as having poor empathy skills

So,so true!

I really don't miss the 9 month stage, I found it so tiring and full on. I'm pretty sure that I'm neurodiverse and have passed all the online tests for autism but am still waiting to be assessed so don't qualify for any help. I just muddle along the best I can. I find parenting pretty stressful and find it extremely hard to make friends with other mums due to my dire social skills and anxiety. Feel free to message me if you ever fancy a chat.

Maybe it would be helpful not to think about it as support for parents with autism (since there will be limited amounts of this with services slashed due to austerity anyway), but just how to get the support you need. The GP might be able to make a referral so you could have some hours of respite with your child in nursery. Whether they call it mental health or autism, the main thing is getting you through it all.

I do think there should be more support for people with disabilities of any kind, by the way - just trying to be practically minded given how limited services are at the moment - therefore subcategories like ‘support for autistic parents’ won’t be likely to be funded. But the support may be out there in a wider sense.

Fucking hell. Some of the comments on this thread are so, so ignorant. NT parents of NT children just do not understand and never will. Yes it's hard for every parent but it IS harder for autistic parents. There is no help for autistic adults, it's like autism disappears at 18 (unless they are on the severe end where learning to make toast would be a skill).

I am not autistic by diagnosis but I do have autistic traits eg lack of social skills huge difficulty making friends

I do find certain activities particularly play dates parties and other social stuff really stressful

That said some of the issues you speak of are difficult for all parents particularly those with little family support - eg it’s hard even for extroverts neuro typical parents to cope with the full on slog of parenthood if they also don’t get any help

Anyway I hear what your saying - hope things improve for you

One of the problems with being shy is that it is very difficult to get to the stage with other mums where you feel you can either give or ask for help (and the giving help is the first step to getting it back, in the mum network) Because I found looking after my own children exhausting as it was, I often didn't volunteer to look after other people's, which meant then the support network just doesn't happen. when you are ill or you need emergency babysitting there is no-one you dare ask.

Looking back though I think I could have asked people, and they would have helped. They would have come round for coffee and been a companion, they would have had my child over for a brief play. Some people are mean and arrogant/too busy but plenty would have helped I had only to ask for a little favour (to start with) It is pride and fear which stops us asking for help from others, fear that people will think we cannot cope, or that they will say no.

For the record I had a few friends I did ask, and I built up that little network that makes such a difference. Just having one kind friend is the beginning, you have to start with just one. (often to be found at a playgroup)Then help from formal sources becomes less necessary. And you help them too, which builds your friendship and your self esteem.

I clicked on this thread because I feel the exact same way, my eldest was easy but when I had my second he was a velcro baby and I found it so so difficult.

There are some horrible comments on this thread though, a real lack of understanding. It's not a fucking competition about who has it harder, of course children are difficult at times regardless, but try and understand just how much more difficult it can be with ASD.

I didn't know until I was autistic until after I had DS 2, and I suspect my eldest is on the spectrum. He wasn't clingy and I found him quite an easy baby. My second is a different story and so much of what he does can be almost impossible for me to actually deal with

There has been some really unhelpful comments, especially the one where the poster asked why the op decided to have children. No one knows how hard it is to be a mum until you are one. My dd was a high needs baby and still can be pretty hard work. I love her dearly but I really didn't expect parenting to be this hard.

There are some very unhelpful comments on here.

OP speak to your Health Visitor they have access to all sorts of sources of support that you may not know about yet. You can phone them to ask for a visit it does not have to be a routine check up.

It must be very difficult to cope with all the external noise and demands of a clingy baby. I have auditory sensitivity relating to hearing impairment and need peace and quite sometimes to recover from the overload, so can relate in some small way, although I do not have autism. As an NT mum of 3 I have had those moments where it is just too much too.

What things help you when it all gets too much? What were your coping strategies before you had velcro baby? There may be ways to adapt them for your needs.

Also is there anyone that can give you some you time, friends, relatives who can take the baby sometimes to give you a break?

If you can tolerate parks which are quite quiet in the morning generally would a post school run walk around the park with baby in the buggy be an option to de stress after the noisy school run? Just to get some quieter time when baby is entertained by the sights in the park and movement of the buggy.