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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

DM not acknowledging she did have a disabled DC

282 replies

Carebearsonmybed · 31/07/2024 16:30

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?

OP posts:
JohnTheRevelator · 02/08/2024 09:10

Wishimaywishimight · 31/07/2024 16:42

She made the comment after seeing someone in a wheelchair so perhaps was referring to physical disability?

This is what I thought.

HellzBellzz · 02/08/2024 08:45

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.

Carebearsonmybed · 02/08/2024 08:34

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.

OP posts:
HellzBellzz · 02/08/2024 08:07

Dogsbreath7 · 01/08/2024 23:30

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?

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.

elliejjtiny · 02/08/2024 01:53

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.

GabriellaFaith · 02/08/2024 00:50

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?

Dogsbreath7 · 01/08/2024 23:30

HellzBellzz · 31/07/2024 17:09

My child is autistic and he requires no support physically, never used a wheelchair, would never be eligible for PIP. So no I don't class him as disabled, and he doesn't class himself as disabled either.

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?

anon666 · 01/08/2024 23:27

I think a lot of people still think of disability as physical impairment.

Firefly1987 · 01/08/2024 22:53

TwigletsAndRadishes · 01/08/2024 09:02

That doesn't exactly clear it up though. Usually, unless it's a purely transactional arrangement, people have at least some level of social interaction before they get to the stage where they have sex with someone. And even with casual sex based on an initial physical attraction alone, there has to be some sort of social and emotional bond that comes after it, if that relationship is ever to move onto a more solid for permanent footing.

When that poster said 'date' she didn't mean literally go on individual dates with individual people. The fact that you've only been on two 'dates' isn't really the point. She meant 'date someone' in the sense that you are repeatedly arrranging or choosing to spend time with a specific person over a period of time, which ultimately leads to forming a committed and exclusive relationship with them.

The ability to do that just seems totally at odds with the way you say your autism manifests itself. It's absolutely mystifying to most of us, that so many people with autism talk about their inability to function in anything approximating 'normal' social interaction and yet they often seem to have romantic partnerships, marriages and children. I accept that it must happen, but I can't pretent to even vaguely understand how.

Yeah I've always wondered this too. I often come across autistic young people on reddit and places who say they've never had a relationship, hell a lot haven't ever even had a friendship, they have no idea how to interact socially. Then you have all the people on the spectrum on MN married with kids, when autism manifests itself in struggling with social relationships. I do wonder how they are so different to the young people on other forums really struggling with this. Who think they'll never be able to be in a relationship and blame it completely on their autism (and resent having it a lot from what I can tell) I don't understand how you can just "fall" into a marriage and have a child. Relationships are hard even for NT people.

WaitingForMojo · 01/08/2024 22:14

blackcherryconserve · 01/08/2024 18:51

Not sure your children will thank you for labelling them disabled. It so much depends where on the spectrum they are.

Also depends whether they view disabled as a negative label.

JLou08 · 01/08/2024 20:38

Your not unreasonable to think that, Autism is a disability. However, as you was diagnosed as an adult, your mum didn't realise you had additional needs a child and doesn't provide you with care now her reality is that she hasn't had the experience of being a parent to a disabled child.

cryinglaughing · 01/08/2024 20:16

My dd was diagnosed with ASD (Asperger's) at 14.
I don't consider myself the mother of a disabled child and she doesn't think of herself as disabled either.

blackcherryconserve · 01/08/2024 18:51

GreenShadow · 01/08/2024 18:37

This is us too. DS reckons he has ADHD and is trying to get tested. If he does, it wasn't obvious when he was a child (other than perhaps being a bit dreamy/scatty).
I've never thought of myself as a parent of a child with disabilities, but maybe I need to start now so thank you for the prompt OP.

Not sure your children will thank you for labelling them disabled. It so much depends where on the spectrum they are.

betterangels · 01/08/2024 18:48

exaltedwombat · 01/08/2024 17:49

You WANT to be labelled as 'disabled'? Well, yes, obviously you do for the purposes of claiming support. But your mother sees you as normal.

I suspect that if you heard her referring to you as 'disabled' you'd swing round to objecting to THAT term!

Agree with this. I just want to be seen as normal. That's all I've ever wanted. But people see the wheelchair first. It absolutely fucking sucks.

upoutandin87 · 01/08/2024 18:40

My son is 16 and autistic - he was diagnosed when he was 8 (aspergers syndrome) as it was then. But I would never think of him or use the term disabled. He was head boy at school and holds a job down but if his routine gets messed up he will shout scream and swear in public - school and work are a breeze for him as they are very rigid and he loves people. I thought disabled was an old fashioned term used to describe autism. Especially as now if you have ASD it is not classed as a disability so you don't qualify for a free bus pass. 5 years ago it was classed as a disability as you were able to get a free bus pass. BUT I can see the confusion as ASD can also mean non verbal, no bladder control and not able to function without a carer and these people would be classed disabled which is very confusing

GreenShadow · 01/08/2024 18:37

blackcherryconserve · 31/07/2024 17:51

Interestingly when my children were young autism and other neuro disabilities were rarely spoken about. One adult child has recently self diagnosed as ADHD and says it explains so much of how she felt/feels in being different from others. She did fine at school and university and her differences were never picked up.

I had no idea at all that she felt different. The OPs mother probably also didn't know. Remember too that neuro diverse girls and women are very good at masking their differences.

Edited

This is us too. DS reckons he has ADHD and is trying to get tested. If he does, it wasn't obvious when he was a child (other than perhaps being a bit dreamy/scatty).
I've never thought of myself as a parent of a child with disabilities, but maybe I need to start now so thank you for the prompt OP.

Carebearsonmybed · 01/08/2024 18:34

exaltedwombat · 01/08/2024 17:49

You WANT to be labelled as 'disabled'? Well, yes, obviously you do for the purposes of claiming support. But your mother sees you as normal.

I suspect that if you heard her referring to you as 'disabled' you'd swing round to objecting to THAT term!

No, you are incorrect in your assumption that you need a diagnosis in order to claim PIP or other support.

I also have some low level support from 2 different autism charities, neither of which required a diagnosis. My obstetric consultant accepted my disability pre-diagnosis. My rights under the equality act do not require a diagnosis.

My point that I think some posters have missed, possibly from skipping later posts, is that my DM (and everyone who spent any time with me) recognised there was something 'wrong' with me. They just didn't have a word for it and was used as an excuse to shame me and mock me throughout my life.

I think some of the earlier posters got it right- as so many kids of the post war generation were institutionalised they only think of conditions such as Down Syndrome, Cystic Fibroses, Muscular Dystrophy, Cerebral Palsy, Spina Bifida as disabilities.

I think younger generations have a more nuanced understanding of disability as encompassing invisible disabilities as well as the above.

I am aware that I'm an atypical case within the adult diagnosed community. I meet/know other adult diagnosed women & most live alone & hold down jobs. For the short time I did live alone I didn't function in a way that'd be recognised as 'normal'. But when you don't have friends or family there's no one to notice and tell you or anyone else that something's very wrong.

My DM did try to have me sectioned once so she certainly didn't think of me as 'normal'.

OP posts:
Differentstarts · 01/08/2024 18:28

exaltedwombat · 01/08/2024 17:49

You WANT to be labelled as 'disabled'? Well, yes, obviously you do for the purposes of claiming support. But your mother sees you as normal.

I suspect that if you heard her referring to you as 'disabled' you'd swing round to objecting to THAT term!

Exactly this I'm technically disabled physically and mentally but I never use the term unless it's to do with benefits. I don't see myself as disabled and I don't expect others to either. Yes my life might be harder in some ways but everyone's life is hard. My issues are my problem and I don't want to be that person posting on Facebook about my diagnosises or hospital appointments just for others to be like you ok hun pm me. People know I'm different they can tell that within minutes of meeting me but it doesn't need to be advertised as everyone is different in their own way. Certain people seem to think people who are NT or not disabled have perfect lives and don't face these struggles and it's just not true. Whenever these posts arise and people start listing the struggles they face, their actually really common things that most people struggle with but others aren't aware of as you don't see their day to day lives and what happens behind closed doors.

saraclara · 01/08/2024 18:14

Based on your post I’d say she sees YOU and not your diagnosis. Which is how most people would prefer it.

That was my reaction, too.

betterangels · 01/08/2024 17:51

Wishimaywishimight · 31/07/2024 16:42

She made the comment after seeing someone in a wheelchair so perhaps was referring to physical disability?

I bet it's this.

exaltedwombat · 01/08/2024 17:49

You WANT to be labelled as 'disabled'? Well, yes, obviously you do for the purposes of claiming support. But your mother sees you as normal.

I suspect that if you heard her referring to you as 'disabled' you'd swing round to objecting to THAT term!

Kalevala · 01/08/2024 17:06

Even more irritating are those expressing faux shock and confusion about her having high support needs now but not being diagnosed as a child...seriously, just say you don't believe her, your "I'm so confused, OP.." "gosh that's really surprising, how unusual" shtick isn't fooling anyone.

Not faux in my case. I'm autistic and have autistic friends and family and it does genuinely surprise me.

neverbeenskiing · 01/08/2024 13:56

It's really disappointing that so many posters are reacting to the OP with suspicion rather than acknowledging that she's a vulnerable person who feels rejected by her DM. Picking apart her posts, asking for a list of her symptoms and interrogating her about her specific care needs, even questioning how she can possibly have managed to get a boyfriend is all completely unnecessary. Even more irritating are those expressing faux shock and confusion about her having high support needs now but not being diagnosed as a child...seriously, just say you don't believe her, your "I'm so confused, OP.." "gosh that's really surprising, how unusual" shtick isn't fooling anyone.

I think many of the responses on this thread are proof that OP's DM's dismissive attitude towards Autism isn't just "a generational thing". Sadly it's much more widespread than that.

OP, I'm sorry your Mum doesn't get it. I can understand why comments like that would feel really invalidating. Of course its not unreasonable to want to feel seen and understood by your own family. As a previous poster said, you may get more helpful responses on an ND specific forum.

Carebearsonmybed · 01/08/2024 13:48

greglet · 01/08/2024 12:55

One thing I can't get my head around (perhaps unsurprisingly, as I’m not autistic!) is that you seem to have a good understanding of what social norms are: I.e., you're aware that people "should" brush their teeth/shower regularly, or that conversation involves back and forth between two people. I'd be really interested to understand (if it's something that it's possible to explain) how one can have such a clear awareness of these norms and not be able to follow them. Perhaps less so the social stuff, because that can be a minefield even for NT people, but certainly the stuff like showering etc.

Not in any way trying to be goady, and I apologise if this comes across as insensitive, but I’m genuinely interested to understand what the stumbling blocks are with these sorts of things!

I learned these things by reading dozens of textbooks on autism, social psychology, etiquette, social anthropology, body language, parenting, etc.

DP has taught me more.

And I've learned a lot from Mumsnet after reading threads over the years.

I'm gaining new insights all the time including on this thread.

OP posts:
WaitingForMojo · 01/08/2024 13:30

TwigletsAndRadishes · 01/08/2024 09:02

That doesn't exactly clear it up though. Usually, unless it's a purely transactional arrangement, people have at least some level of social interaction before they get to the stage where they have sex with someone. And even with casual sex based on an initial physical attraction alone, there has to be some sort of social and emotional bond that comes after it, if that relationship is ever to move onto a more solid for permanent footing.

When that poster said 'date' she didn't mean literally go on individual dates with individual people. The fact that you've only been on two 'dates' isn't really the point. She meant 'date someone' in the sense that you are repeatedly arrranging or choosing to spend time with a specific person over a period of time, which ultimately leads to forming a committed and exclusive relationship with them.

The ability to do that just seems totally at odds with the way you say your autism manifests itself. It's absolutely mystifying to most of us, that so many people with autism talk about their inability to function in anything approximating 'normal' social interaction and yet they often seem to have romantic partnerships, marriages and children. I accept that it must happen, but I can't pretent to even vaguely understand how.

Autistic people often marry autistic people. So the conversational norms and ways of communicating are different. We also often have autistic children. Whole families of neurodivergent people are common.

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