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?

I think the difference here is whether you would be considered disabled in the eyes of the law. The Equality Act 2010 provides for people who satisfy the Acts’ definition of disabled, to be able to live their lives with the same life chances and other opportunities as non disabled peers, and not be disadvantaged by disability. As long as you feel you’re not similarly disadvantaged then have at it - more power to your elbow !!

I wouldn't know. I have never tried to claim disability benefits or anything. I'm disadvantaged compared to others with my intellectual ability and education, I'd say, but not compared to an average person.

It's disappointing, but she obviously doesn't equate your Lardner giving up work to help you, as you needing a carer, and her definition of disability is someone with physical needs. You won't be able to change her opinion, and she isn't interested in your armchair diagnosis because you got one as an adult, so either you need to steer conversation away from this as a topic, or decide if you can keep having a relati9nship with her.

Those confused about the carer aspect. Her partner gave up work to be it, there is not outside care coming into the house

It still indicates very high needs. My dgm has alzheimers and her husband works part time.

Adults that were late diagnosed as being ND will have been masking all their lives.
That can take a huge toll, and as they get older they find that they struggle to cope more with the demands of life.
My DP is autistic (diagnosed in his late 40s).. he is now in his 50s and finding life harder to deal with.
Plus, things like anxiety can strike at any age. If severe, it would require someone to care for you.

I'm and autistic woman. Communication with men, particularly on a romantic level, or other autistic people is a lot easier than with nerotypical women. Men tend to be more interested in making women laugh, physical affection and then deep and meaningful conversation as the relationship progresses. That's easier than the small talk and than the riddles that some NT women use, they can say the opposite of what they mean or allude to things that autistic people really struggle to understand.
The other thing with romantic relationships is there is an emotional connection, like a biological drive. I'm not sure if NT pick up on these vibes. I suppose it may be like how you can bond with babies and children even when they don't speak, there is just something that connects you and it doesn't need lots of verbal communication to build that relationship. However, as it builds you can start to feel more comfortable with that person and be able to communicate in a way that you couldn't manage with others.

@Carebearsonmybed You get the highest rate of care on PIP for autism? How? It's only awarded for people who are completely bed or wheelchair bound. Slightly different parameters for DLA's highest rate of care but those are the Parameters for PIP’s highest rate of care

So, when DP did still go to work he'd leave c 8am & come home c 4pm.
I'd still be in bed, not dressed, not washed, not eaten, uncomfortable from needing the loo, stained the bed if I had my period, have marks on me from self harm/picking at myself.

In some ways I'm like a primary aged dc- I can be left all day and unless there's an emergency probably won't come to harm but you just wouldn't leave a child home alone all day would you?

Now that I have support I get up and outside every day, I eat 3 meals a day, eat a variety of food, my toilet habits are normal, I have a bath once a week or before a social event, I can attend social events with preparation and support in the recovery period.

It's now a life much more resembling a normal life.

We did try a paid carer for a while but it didn't work. I can't articulate what I need to a stranger. I didn't know how to communicate with her what my needs were. I'm good on paper but I couldn't say all of what I've said on this thread verbally. What I need is more supervision & prompting than the more hand on tasks other disabled people may need. Eg I need someone to notice it's lunchtime, tell me it's lunchtime, suggest a healthy meal, prepare it or help me rather than needing someone to literally put a spoon in my mouth for me.

That kind of having/needing someone around all the time 'checking' on me doesn't really suit paid care as it'd cost a fortune for an all day service when it's frequent small snatches of time I need help. A paid carer sitting watching me all day would be torturous!

You’re misinformed. Firstly autism can mean a person has high needs their whole life, my middle son has the self care abilities of a toddler and that hasn’t changed in 5 years - he will very likely be entitled to High Rate pip at 16. As for DLA, the parameters for HRC is ridiculous, a child can have severe, lifelong needs but if they sleep through the night then they are not entitled to it at all. And I know at least two people who get the highest rate of PIP, they’re not bedridden or in a wheelchair.

You are being ridiculous. Just because some other people are functioning well, don't need support with anything, hold down jobs, great education, and so on and so on.....if these people don't consider themselves disabled that is ok. It's not shameful, there's absolutely nothing to be ashamed of with any disability. But some people DO NOT NEED SUPPORT and that is ok!!!!!

Autism is a disability even if you’re currently at a stage where you don’t need full support though. For an autistic person to be ‘functioning’ to a socially acceptable standard takes much more effort mentally (and physically) than it does for an NT person. It’s the reason why so many girls are misdiagnosed when they’re ND, because they can mask so well that it seems they’re ok. I have a friend who is physically disabled, lives alone, works, university educated - does that mean they’re not actually disabled? Or because you can see their disability from aids they use it’s not the same?

@LostTheMarble you said they are physically disabled, so how can they not be disabled?

How can someone with autism ‘not be disabled’ is the point, if you’ve been diagnosed with ASD then it is recognised that you have a condition that is disabling in some areas of life. Just because you can’t see it in the same way you can a physical disability, doesn’t mean it isn’t.

Autism is a disability but equally, individuals have the right to not identify with that, and to choose how to describe themselves. As long as they’re not speaking for others but they’re choosing how to view themselves and that’s perfectly fine.

Incorrect my dd has autism and is on the highest rate. She isn’t bed bound or in a wheelchair.

I absolutely didn't say it isn't a disability. It clearly is if it's affecting someone in that way. All I said was my son doesn't see himself as disabled and neither do I, because he doesn't require any level of input from anyone in his life for anything he does. And we are ok to feel that way, we don't need strangers on forums telling us we shouldn't feel that way. Everyone is affected in different ways, different levels of support needed, I get that. My son had an unrelated illness when he was younger which required a lot of support, he was disabled by it and was entitled to PIP (DLA), all of this was then cured and life changed for him to no longer require any of that. He needs absolutely nothing from anyone, physically or mentally.

So, when DP did still go to work he'd leave c 8am & come home c 4pm.
I'd still be in bed, not dressed, not washed, not eaten, uncomfortable from needing the loo, stained the bed if I had my period, have marks on me from self harm/picking at myself.

I have been lurking on this thread for a while.

You come across as very self aware and articulate. I hope you don't mind me asking this, but as you are so self aware what was preventing you from using the toilet if you were so uncomfortable? I can't imagine not going if the facility was available. The relief is immense when you have been hanging on.

I’m glad your son doesn’t need additional support. I am assuming he’s an adult who doesn’t live with you or with a partner? Works full time? Only has to take care of his own needs? There are absolutely adults with ASD who can manage life without facing burnout or MH issues at some point. Many do though, usually because family life and work becomes overwhelming, and what they’ve managed ‘fine’ with and had people in their lives convince them that they’re fine because they managed school and a job, they often can’t say they’ve not been coping for a long time because the expectation is to keep that mask going for as long as possible. Men with ASD often have a severe burnout by middle age and don’t recover from it/need high support/show physical health issues.

Was this the same when you were a teenager at home ( in bed all day etc.) or did something change? Autism was much less recognised, including by mental health professionals.

@LostTheMarble your assumptions are incorrect. Maybe further in life he will struggle, I am talking about now and the past as I don't know what the future looks like. Absolutely no one has ever put him under pressure to be a certain way, he's got the love and support of everyone and knows he can talk to us about anything. During school, college, university there has always been SEN workers who have made themselves known to him should he need to speak to them about any worries.

Obviously you know your situation best. There is a long running thread in relationships about living with a partner with ND and how some people struggle more as they get older, may give you a different perspective or insight about how struggles increase.

Another poster accused me of wanting to cure autism. I simply corrected that.

@LostTheMarble yeah we definitely know his situation best. And thanks, I've done plenty of reading up on it. At the moment he doesn't struggle at all, if he ever does we will deal with that when it happens.

You may have met the criteria at the time of diagnosis but that may be a long time ago. 25+ years for me.