Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Flip

1 2 3 4

Original poster

Aibu there’s not enough support for Autistic parents?

83 replies

Autisticappropriation · 20/02/2018 11:22

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.

OP posts:

hairycoo · 20/02/2018 13:14

why don't you use childcare to give yourself this time? SS may be able to help financially if you cant afford it yourself. Maybe im wrong but it is this sort of attitude I find somewhat grating. Other disabilities are given financial help through dla (autism being a neurological disorder is notoriously not). Childcare is possibly a form of support but many autistic people (and nt parents too probably) just could not afford it, given the fact that many parents struggle to afford childcare to go out to work, let alone anything else. Id seriously doubt if SS would pay for childcare, perhaps as a one off but certainly not offered as a regular support thing as they just dont have the funds. Furthermore it would mean having to explain to someone (who possibly wont have any indepth knowledge of autism in adults) why you need this kind of support, and the high possibility of them judging you as a lazy feckless parent, as I have heard on countless occasions (not about me but other people i know who are autistic).

Qvar · 20/02/2018 13:56

Other disabilities are given financial help through dla (autism being a neurological disorder is notoriously not).

You have to detail in the form how your autism affects your daily life, and this is particularly difficult if you don't KNOW or can't IMAGINE what it might be like to be NT and not have Autism. How can you just GUESS how Autism is different to being NT?

I'd advise getting someone else to fill the form in, someone who knows you well, from their point of view of your differences and needs, because PIP is given for adults with Autism as long as it is correctly applied for.

heron98 · 20/02/2018 14:00

This might sound harsh but why did you have children if you knew this about yourself? There is no way I could handle parenting for the same reasons you cite - I like to spend lots of time alone, can't stand being touched all the time so I have chosen not to have them. You can't really have it both ways.

cestlavielife · 20/02/2018 14:26

If you qualify for PIP you can use that to fund childcare
If you are able to be employed you could go to work and fund childcare that way from joint income
You could fund childcare from family income anyway

If you speak to your gp who liaise with as to get them to fund a package to include childcare you may get e.g. a childminder funded or state nursery

Maybe easiest option is finding childcare yourself and maybe see if any suitable job so you can help fund it ?
Or do you have a job anyway and plan to return after maternity leave? Go back sooner.

Piffyonarockbun · 20/02/2018 15:06

I would have loved more than one child however i knew that i would find 2 extremely stressful and that i probably wouldnt be able to cope. So i stuck to 1. Not ideal and not actually what i wanted but i knew that to keep myself sane and make a halfway decent parent i had to make that decision. It was a tough decision to make though. It was really hard between about 13 and 18 months but she started going to nursery at 3 and its been getting easier ever since. Youre stuck in the middle of it right now and it feels neverending but these stages dont last forever.

UgandanKnuckles · 20/02/2018 15:15

At the risk of sounding callous... how did you think being a parent was going to be?

SmashedMug · 20/02/2018 15:32

At the risk of sounding callous... how did you think being a parent was going to be?

Plenty of people don't know what they are getting into by having children. You only find out by experiencing it.

SpitefulMidLifeAnimal · 20/02/2018 15:55

I need wind down time alone each day which I’m not getting and haven’t had since the baby was born

Can you be more exact about the services you expect? Someone may well be able to signpost you if they know what it is that you want.

SpitefulMidLifeAnimal · 20/02/2018 15:56

Also, you mention your partner works long shifts. He still needs to do his share at home though so do make sure he does.

coffeeforone · 20/02/2018 16:14

Could you pay for a bit of childcare OP? Or does your baby not nap at predictable times where you could take the bit of down-time you need?

MattBerrysHair · 20/02/2018 16:14

You're not sorry to sound unsympathetic at all. Autistic people need alone time to recharge in a way that NT people cannot possibly comprehend unless they are suffering from mental illness.

The thing about having children is that you don't know what it's going to be like at all until it happens. Pretty much how you can't know what anything else feels like until you actually experience it first hand.

Also, a lot of parents who have a diagnosis of autism, especially women, didn't receive it until after their children were born. My dc were born in 2008 and 2010 and my diagnosis wasn't until 2014. If I'd known I was autistic pre-dc I wouldn't have had them until I'd done the DBT course that I'm doing now. The baby years would have been so much more manageable with the skills that DBT teaches.

FissionChips · 20/02/2018 16:17

Such awful comments on this thread.

SaskaTchewan · 20/02/2018 16:21

if I pretend to have PND I can access loads of support
Not in my area, there's nothing available for mums with PND.

I need wind down time alone each day which I’m not getting and haven’t had since the baby was born
Unless mums have a close network or family and friends, or can afford a nanny or a place at the local nursery for a few hours a week, it's the reality for every parent. There's just no support in the UK, and I can't see anything improving any time soon.

ShortandAnnoying · 20/02/2018 16:24

Some parents with autism find looking after babies easy. It's very individual. I have a relative with autism who is like this. She loved looking after her babies and was very good at it, but does find it harder with older children and teens, especially as her kids have some problems themselves. I think she would have coped ok with easy children but supporting their additional needs was difficult for her.
So I think there is a need for help but it should be on an individual basis of what the person needs.

MattBerrysHair · 20/02/2018 16:28

Actually, when my dc were babies I would have really benefitted from weekly/fortnightly visits from an HV with specialist knowledge of mothers with ASD. There were so many things I didn't know. I couldn't figure out what to prioritise so prioritised everything and burned myself out. All my focus and attention was on the baby if he was awake. When Ds2 was a toddler I was telling my therapist that I'd felt guilty for reading a book for 20 mins instead of playing with my child one day. He was happily playing with his brio track at the time in front of me. My therapist had to give me permission to not feel guilty and realise that I wasn't neglecting my dc!

Having someone to put things into perspective could have seriously saved me some anxiety.

phoenix1973 · 20/02/2018 16:31

OP I get you. I have the same issues. I give up. I don't know what the answer is but I don't ever expect NT folk to understand and be able to help. How can they? Half the time I don't understand why I'm not normal and the rest of the time I'm beating myself up for being unable to be normal.
Parenting is hugely difficult. I've stuck with one. I don't cope with stress, change, loud noise, bright lights,strong smells, being touched too much or crowds.
It gets a little easier after 5. Now we're onto pre-teens which is more challenging. As I'm sure it is for NT also.
I don't know what I'd ask for. But what really helped was my dad taking DD out for a couple of hours while I was alone at home. Wonderful. I'll never forget that.

BoldKitties · 20/02/2018 16:37

Sorry to sound unsympathetic but this isn't exclusive to autism. I'm pretty sure every mother has felt this way. That's just the way things are and it's what you signed up for when you chose to have children. Spiteful, you don't sound remotely sorry to be unsympathetic. Yes, it's likely that every mother has felt this way. However, surely you could imagine why it might be that bit more difficult for a mother who has Autism?

And as for it's what you signed up for when you chose to have children. Does anyone actually really know what they are signing up for when they have children? I mean you will never actually know what it's like until you have children. You can plan, read books, hypothesise, but you'll never actually know what you've signed up for until you're in the midst of it

MattBerrysHair · 20/02/2018 16:38

He wants to be held because neurotypical children are comforted by physical contact. He's not "refusing to crawl", he's asking for comfort.

This is such an insulting and patronising post! I can't believe how unnecessarily cruel people can be when someone in distress is reaching out for help

BoldKitties · 20/02/2018 16:44

MattBerrysHair, unfortunately there are quite a few people on here who enjoy kicking people when they are down. They are like cats toying with a mouse, and it's horrible.

SaskaTchewan · 20/02/2018 16:46

He's not "refusing to crawl", he's asking for comfort.
to be fair, a 9 months old doesn't refuse to crawl. Babies can be bloody hard but they are not spiteful. They are not the enemy.

MattBerrysHair · 20/02/2018 16:49

I'm going to start a thread in Parents with SN about things that would have helped us on becoming parents. I had the same feelings of being completely lost and struggling, but Google for support only produced results for parents of autistic children, there was nothing for people like me. All are welcome to contribute, the more ideas and suggestions the better.

Thanks

Wintertime4 · 20/02/2018 17:01

I think you do need to manage your own needs here. It’s part of the decision to have a child. I’m not sure it will help to think ‘I’m different, I need more’. Everyone struggles.

However if you are suffering high anxiety, depression then you can ask for help from the GP. Also try self management such as eating well, exercising, pacing yourself.

SmashedMug · 20/02/2018 17:09

Are some people being deliberately thick on here today?

Yes, every parent needs alone time or downtime etc. People with autism might need more of that or a more consistent level of rest than someone who is NT by the very nature of them having autism. And an NT parent might really really want that alone time but still be able to function on the days they don't get it. On the other hand a parent with autism may really struggle with concentration or to function beyond the basics when their brain hasn't had chance to rest for a bit. It's not a "Get over it! Deal with it! You knew what to expect so crack on like everyone else!" type thing that the person can choose to overcome. It can be a literal shutdown or meltdown.

Think of any children you know with autism who reach their limit and that's them done for the day. Those children grow into adults and some of them have children of their own. Their autism doesn't just go away because they are a parent.

SaskaTchewan · 20/02/2018 17:13

And an NT parent might really really want that alone time but still be able to function on the days they don't get it.

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.

MattBerrysHair · 20/02/2018 17:18

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

With respect, that is another thread. This thread right here is specifically about the struggles of an autistic parent precisely because she has autism, not because she's a parent.

Flip

1 2 3 4