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 you are missing the point a disability does not mean only physical - are you the same age as OP’s mum? If your child has not needed any adjustments in school, count yourself lucky but please do not diminish the experience of others, incl the OP.

in fact if your child has needed no accommodations or adjustments how did he get the diagnosis? Someone somewhere must have noticed something different about your son?

Every individual is different.

One of my children is autistic. I definitely do not view her as disabled. I see her as someone's whose brain is wired to see the world different. She had an incredible gift for dance, music and maths and sees the world very much through these mechanisms in patterns and rhythms. Whose to say her way is wrong and mine right? Some of the smartest and richest people in the world are autistic. I doubt many of them see themselves as disabled.

I am not saying she doesn't struggle with certain situations. But she is not disabled. Differently abled.

But as I say, everyone is different and autism often comes with a dual diagnosis too which can have an impact.

One of my daughters friends is non-verbal and has learning disability as well, I imagine she may have more difficulties.

My point is, yes, you may be disabled. But I don't think it is right to apply a blanket rule that all autistic people are disabled. I feel that is an old fashioned view.

I suspect to your mother is simply uneducated in it, and to her, a disability is the view as someone who struggles physically as opposed to mentally. It is not necessarily her dismissing that you had any struggles.

I hope that helps perhaps out a different perspective on it?

I understand. I have a dh who has autism (Aspergers syndrome) and 4 sons who have it too (and 1 who has dyspraxia like me). Dh and the dc are all very different. 4 of them have insomnia. 3 of them can't cope with change. 4 of them have meltdowns. 2 have shutdowns. Dh and I both have disabilities but different ones so together we are 1 capable person. My MIL doesn't listen to me when I say she can't do something as it causes dh to shut down. Or if I say please don't hug ds2, he is a sensory avoider.

In my school in the 90's it was mainly the disruptive kids who got help and everyone else had to sink or swim. Having a child with a disability was shameful and avoiding a diagnosis was common. I remember parents of children with conditions like hearing loss, cystic fibrosis and brittle bone disease having to fight to keep their child in mainstream school. Totally different to now when parents are having to fight to get their non verbal and incontinent autistic children into special needs school.

I'm not missing any point. Please don't tell me what I'm diminishing you have no idea what you are talking about. This was OPs question:

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

I disagree with that as a parent with an artistic child who doesn't need any physical support or any support for that matter. He has autism, diagnosed when he was child so it helps us all understand why he sees things in a certain way or needs his routine to be a certain way. He needs no support with that.

My child's situation doesn't compare to OPs, OP needs support my son doesn't. It doesn't mean he is not autistic.

NICE clinical guidelines say that autism assessments and diagnosis should follow the criteria set out in the DSM 5 and ICD 11 criteria.

The ICD 11says:

"significant impairment in personal, family, social, educational, occupational or other important areas"

The DSM 5 says:

	"criterion D: symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning"

So I'm confused how all these previous posters have got diagnoses for their DC but say they are not "impaired" let alone significantly impaired in important areas of functioning.

If this isn't the case they do not meet the clinical criteria for an autism diagnosis.

If autism = significant impairment with functioning = disabled under the Equality Act 2010.

"You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."
From the government's own website.

This denial of disability just feels like underhand discrimination to me.

You are aware that people are affected differently aren't you? My friend with a son the same age with an autism diagnosis needs another adult with her when she takes her son out, he's so vulnerable and will run off into the road and has zero concept of danger at all. A work colleague of my sons also.has autism and doesn't need additional support in his day to day tasks.

This is what I thought.

You can be disabled by the standards of the equality act and not feel disabled though.

DS, who I mentioned earlier, has never had a friend, he spends every play time at school on his own. People might consider that to be impaired social functioning.

DS does not. Over the years, he has been offered opportunities to play with other children, chances to talk about how he feels about it by various people, he is very clear, he likes to play on his own, he likes to have time at play time to spin (to meet his sensory needs). He is happy and content. His needs don't fit with the expectations of "normal" but I don't think he feels disabled by that as long as no one makes him feel that way.

There are lots of clothes DS won't wear because of how they feel and lots of foods he won't eat. That's fine, he gets clothes he likes and food he likes. I don't think he feels disabled by this any more than I feel disabled by hating mushy peas. We just accept it and accommodate it.

I could continue listing things but I think my point really is that for DS, his needs are met, he doesn't feel disabled because he is enabled to live in a way that works for him. This may well change over time and maybe as an adult he will feel differently, I can't say.

that for DS, his needs are met, he doesn't feel disabled because he is enabled to live in a way that works for him

That’s exactly the point of the Equality Act though. The definition is there for clarity whether people feel disabled or not. A lot of disabled people are really only disabled by what society imposes on them as the norm, and as you’ve said here, if you can find a work around that enables you to live the way you want, that’s great.

I don't disagree, I said earlier in the thread, DS is technically disabled (by equality act criteria / societal standards etc.) as am I in different ways.

It's just not how I would usually think of him. My point was that that's not about me discriminating against my child by denying he has disability. It's just that you can meet the criteria but not feel disabled. Me insisting he is disabled despite how he feels about it (currently) wouldn't be particularly helpful to him.

There's a lot of cognitive dissonance on this thread.

People seem to find the 'disabled' tag shameful, maybe explains some of DM's actions/words?

The denial of disability reminds me of women being abused by their partners but saying it's not abuse because he's not physically violent.

Also maybe even these days there are still lots of parents of autistic DCs who don't fully grasp how much of a struggle their DCs lives are. I certainly masked & hid a lot of my autism-related impairments from my parents.

People seem to find the 'disabled' tag shameful, maybe explains some of DM's actions/words?

It's not a term I identify with, I have different abilities not a lack of ability. Strengths and weaknesses, like everyone does. Just atypical to the norm.

How is that different from any other disabled person?

I’m AuDHD. I do identify as having a hidden disability. I also see neurodivergence as difference rather than deficit. For me, they are not mutually exclusive statements. Others with the same conditions don’t identify themselves as disabled even though the Equality Act applies to them. That’s also ok.

I don’t think we should be telling each other how to describe ourselves.

I actually find that quite offensive.

I know my DS, you don't. I know what his difficulties are and what they aren't. Your experience isn't the experience of every autistic person or every disabled person.

It's nothing to do with it being shameful. Go back to the definition. "A substantial and long term negative impact". My own disability could absolutely be be described that way but I have adjusted my life so that it doesn't impact as much, I don't feel it is having a negative impact at the moment (there are certainly times when it has) therefore I don't identify at the moment as disabled. DS is a happy and content child, if you asked him if his autism was having a substantial negative impact he would be baffled. Challenges at times, yes, substantial negative impact no.

Could that change in future? Absolutely.

It's not cognitive dissonance, but recognising that the disability is as much about the impact as the condition / symptoms etc. and impact can be mitigated.

I find a lot of people don't realise how disabled my 18 year old is by his autism. He doesn't scream, stim, lick the walls, eat paper straws or try and hug random people like my 10 year old does. But when you look at him, or in photos, he has this confused look on his face, a bit like he is somewhere where everyone else is speaking French really fast and he only knows a few phrases. He doesn't look autistic but on the inside he is struggling.

I'm not a disabled person. I, personally, might identify as disabled if I was an average person with a disabling deficit in one area. My profile is just spiky in an unusual pattern compared to the NT population. I think differently but I am not disabled. Perhaps I had to be disabled at the time of my childhood diagnosis but unless you believe autism can be cured then I am still autistic.

I don’t believe that autism can, or should be cured.

So I'm still autistic but I am not disabled.

YABU. Don’t know how you can make it through to adulthood then suddenly need your partner with you full time to care you. Your mum was right it’s COMPLETELY different to having a profoundly disabled child with round the clock physical care needs.

WaitingforMojo
I would take a cure anyway for my profoundly autistic children - one of whom needs three to one care all the time and has suffered hugely as has the whole family. I think therein lies the difference.

As I said earlier, I don’t think anyone should be telling another person how to define themselves.

I’m not here to argue with parents of profoundly disabled children or enter into disability top trumps. But you know nothing about me or my life so please don’t make assumptions.

Pleased into make inflammatory statements then that autism should not be cured. It is extremely offensive.

Why shouldn’t it be cured if possible ? Genuine question.