DM not acknowledging she did have a disabled DC

[Carebearsonmybed]

I'm autistic. Adult diagnosis. DM aware.

In a recent conversation she was discussing how hard it must be for Mums with disabled children, in reference to her seeing a Mum with an adult child in a wheelchair in a shop.

She said she couldn't have coped with a disabled child and how hard it must be when they need lifelong care.

Afterwards it dawned on me that she hasn't accepted my diagnosis and doesn't recognise my autism as a disability.

I did have obvious additional needs as a child which were unmet both at home and in school. These needs have continued into adulthood. I am on the highest care component of PIP and have a full time carer.

We have always had a difficult relationship. I believe she is also autistic and have told her this but she did not accept it.

I've grown to not expect anything positive from her but this comment has really stung.

AIBU that if you have an autistic child you are a mum of a disabled child?

Thankyou WaitingForMojo

Do you put your children first now, or are your needs/wants still more important? Does your dp agree? *
I used the woman who must not be named on mn's baby care book and followed her strict routines which suited my rigidity. DC went into paid childcare asap and did 50 hours a week.*

Exactly. What about what your children need? Bring a parent is balancing everyone's needs.

Is your child autistic? What would you have done if they had high care needs? My son smears poo all over his room if I don't change his nappy instantly

I think the original possibly goady point of the thread has been lost a bit,
imo OP whilst you have complex needs (I found your description of needing a full time carer a bit misleading as you would never be funded for 24 hour care in my professional experience, but now understand you meant your partner cares for you instead of working); and it’s sad your mum doesn’t really acknowledge your needs.
she was clearly talking about raising a child with physical and learning disabilities who would have a high level of physical dependence all their life and Would not be able to get married or have a partner as they wouldn’t have the mental capacity to to do that. And certainly wouldn’t be able to have children. Whichever way you look at it that is obviously different from your situation.

GF’s routines don’t suit every child. Didn’t mine. Was perfect for my sister’s baby which irked her no end because she wanted a more flexible one 😉

And GF only covers the baby months.

Does their father do all (or the vast majority) of the care?

I did raise an eyebrow at your disappointment in not having a “normal” mother, but deciding that was OK for yours.

Quite simply put.

You didn't have a diagnosis as a child, so it wasn't acknowledged that you were a disabled child, so she doesn't SEE herself as being a mother to a disabled child.

Same boat here.. adult DX of adhd/asd and now physical disabilities. my mom knows i am diagnosed, but didn't have the experience of being a mom to a disabled child. Her experience is being mom to a disabled adult, so relates more peer to peer than parent to child.

I AM a mom to a disabled child, my son has been diagnosed since 7, had issues since a baby, been in receipt of higher care DLA and now PIP, needs near constant supervision, prompting to eat, meals made for him, prompting to go to the bathroom...etc.

Been having this conversations with my mom as she keeps telling me ds needs to be encouraged to be more independent, completely missing that he isn't socially/emotionally capable atm, and may never be.

I agree.

This is why I'm so negative about diagnosis sometimes, because you got to adulthood got married, got a house, had children then got diagnosed and gave up on life and decided you can't do anything because you have autism even though you could do all this stuff prior to your diagnosis. It's seems to me like you have spent a lot of time reading up on autism which isn't always a good thing. For e.g. I have quite severe diagnosed health anxiety which means when I read the leaflet that comes with the meds I convince myself within 2 minutes that I have all the side effects which obviously i dont but its what your brain does when you spend to much time focused on something. You seem to want to think of yourself as disabled and want everyone to think of you that way to. You don't want to try to improve your life or practice skills to improve as its easier to stay as you are and to be looked after by your husband and kids. I genuinely feel sorry for them. Your life doesn't have to be this way you are making that choice.

Well I suppose her comment was that she couldn't have coped giving a child life long care. You are disabled but she isn't doing this for you so it is most probably correct that she couldn't have coped.

I wonder if the fact that (presumably) it’s financially possible, through PIP and benefits for the OP’s husband to give up work to be with her all the time has meant that the OP has made her autism the core of the family? I have a sibling with epilepsy, autism and learning disabilities who until quite recently only had short fifteen minute visits from carers throughout the day. They certainly didn’t qualify for 24 hour cover. If your husband becomes sick himself, has to do stuff with your children or go to do hobbies etc, do you have cover from carers?

PIP isn’t an income replacement benefit aand even at the highest rate would only be around £175 a week - assuming OP qualified for both higher rate care and mobility components. They would qualify for carers allowance on top at £82 a week assuming DP earned less than the threshold. IME as a disability outreach worker, it’s very difficult to secure PIP for autism as the assessors have limited understanding of it. Cover from carers would eat into any PIP award as the benefit is counted towards the cost of LA provided carers.

Ex Disability outreach worker here. That comment is no more than l would have expected having had first hand experience of the most dreadfully unfair decisions based on assessors’ reports that demonstrated little, if any, understanding of the problems claimants actually faced, a willingness to stick to a rigid regime of reducing complex disability to a point scoring exercise based on criteria that have little relevance to the actual cost of disability, and dismissive of medical evidence from health professionals far more qualified.

I’ve been present at numerous tribunal cases where DWP have been severely criticised for the quality of decision making, and several cases where claimant complaints referred to MPs have been upheld, benefit reinstated and an apology issued by DWP. Is it really your intention to come here and defend a system that has been roundly condemned as unfit for purpose and which has been the source of so much distress and harm ?

Being a child with autism and being an adult with autism are different and being a parent with autism is different again. When you are a child, you have to rely on a parent/carer to help you avoid your triggers. But also you don't have responsibility.

As an adult you have responsibility and as a parent even more so. So you need a carer to help you do the things you can't. There are a lot of things that I do for dh that he can't do that as a child he wouldn't have to. Like organising appointments, persuading him to go to appointments, doing his repeat prescriptions, sorting out his universal credit etc. If I wasn't there to help him he would have to pay someone else to do it. But when he was a child it would have been done by his parents.

But where not talking about help with admin tasks which a lot of people need help with. Where talking about a woman who left home in her teens, lived alone, met and married a man had 2 children and now all of a sudden can't even go to the toilet by herself.

It’s very common that processing and interoception ability declines for autistic people when the demands and processing load is higher. Plus it doesn’t sound at all as though the op was able to manage personal care before she got married.

Autism is a dynamic disability.

Where does it say that the OP has 2 children?

I have reread all of her posts and none of them say how many children she has.

I must admit I thought it unusual that she had children due to the level of care she requires.

Some posts on this thread are getting dangerously close to suggesting that disabled people shouldn’t have children.

This may be derailing the thread but can I ask a few questions to help me understand?
Where is the line between masking and trying to do something to improve your happiness and functioning?
If someone had a chronic physical health problem they would be advised to do physio, pacing, breathing exercises etc. to increase their independence. This could be hard work and difficult for them.
If someone had chronic anxiety they would be encouraged to learn ways to reduce its effect.
It would also make life better for these people if accommodation was made for their difficulties.
Masking long term leads to burnout. What do Autistic people on here think would give the best quality of life? Asking in a spirit of genuine wish to learn.

It’s very tricky and even as an autistic person I sometimes struggle with this, and similar questions.

I think the end result is part of the answer. Masking doesn’t improve our lives, it enables us to blend in at the expense of our mental health and wellbeing.

I see masking as having to behave in a neurotypical way, to present as neurotypical when I’m actually an autistic person. Behaving in ways that are counter to my neurology. It can sometimes be useful in that it keeps us safe from negative reactions. But long term it is harmful.

Things we can do to improve our own lives, for me, I think if it improves our lives it isn’t really masking.

We can certainly manage life in ways that enable us to function better, minimise meltdowns, promote interoception etc. For me, a lot of that involves pacing sensory demands and not doing things in the expected way. So isn’t really masking.

For example, now that I don’t need to mask at work, I have accommodations in place that optimise my general functioning. Regular breaks, working from home, advance notice of things changing where possible. I also have a support worker at work who manages the admin part of my role which tended to get me overloaded. This enables me to manage the main part of my role very well.

Now that i don’t mask at home, I can tell my children that I’m overloaded and need silence, and model meeting my own sensory needs. This means I won’t melt down.

Masking for me would involve pretending those needs don’t exist and pushing through, which i wouldn’t manage for very long.

I hope that answers the question at least in part. Other autistic people will experience it differently though, I don’t want to speak for everyone.

For example, now that I don’t need to mask at work, I have accommodations in place that optimise my general functioning. Regular breaks, working from home, advance notice of things changing where possible.

I don't know if these things are possible for many workers though. I can't work from home, I often have change sprung upon me with no notice or I'm asked to stop one thing without warning and immediately do another.

Does it have to be that way? Have you asked for reasonable accommodations, or had an Access to Work assessment to see what can be done to support you?

It's part of the job and my autistic colleagues are treated the same. Minimum wage.

I agree that I’m very fortunate to work for a very disability positive firm. But many people don’t realise how much actually can be done. I think for me, i wouldn’t manage to work for a less accommodating firm or in a role that couldn’t be adapted to my needs and I’ve taken that into account when making decisions about work.