Self identifying as disabled

[GCautist]

There’s a slight furore in Scottish politics I was reading about on Twitter last night, where it was stated in an SNP doc that a potential candidate who self identified as disabled or BAME would be placed at the top of the list for list votes to ensure better representation in parliament.

On the surface having diverse representation is much needed but there’s been a lot of issue with the term ‘self identify as disabled’.

IMO there’s a difference between declaring you have a disability and self identifying as having a disability and it’s the wording rather the policy itself that is problematic.

Aibu to think you can’t identify into being disabled in the same way you can’t identify out of being disabled?

Can we please discuss this issue without it turning into a rant about independence (for or against) or how awful you personally believe Nicola Sturgeon is?

"Well there will be services for adults with autism."

I hate these answers. There may well be services. Actually accessing them is totally different.

I hate these answers. There may well be services. Actually accessing them is totally different

Not really. If you meet the outcomes for an assessment under the care act, then contact social care and ask for an assessment. If you are then found eligible for services under the criteria then you will be supported or signposted to try and access them.

I know the post was ages ago but in case you see this - I meant my son gets DLA and I was told if you get DLA or pip you are registered as disabled. Like I can sometimes get in places free as his carer as he is registered disabled (that's what it says anyway) and I just have to show his award letter. But he doesn't think of himself as disabled, just different.

If you meet the outcomes for an assessment under the care act, then contact social care and ask for an assessment. If you are then found eligible for services under the criteria then you will be supported or signposted to try and access them

Because it really is that simple.

@FeedMeSantiago

A friend of mine has tried to get a diagnosis of autism as an adult on several occasions, in different areas.

She was turned down in some as they 'don't diagnose adults' and in another area she was turned down as she was married 'and if you were autistic you wouldn't have been able to maintain a relationship for long enough to get married'.

It's not easy to get diagnosed with conditions like autism as an adult. I believe she would get a diagnosis if she was assessed but as she's in her late 30s the NHS won't assess her. She can't afford to go private. It doesn't alter the fact that she struggles.

That's awful. Your poor friend. I'm autistic and married. I was 38 when I got my diagnosis, off the back of my DD getting hers. But we weren't taken seriously, even for DD, until we moved abroad. DS was fast tracked for assessment as the policy here is that all children get screened once there's 2 people diagnosed in the family.

I meant my son gets DLA and I was told if you get DLA or pip you are registered as disabled. Like I can sometimes get in places free as his carer as he is registered disabled (that's what it says anyway)

There isn't a national register of disabled people. Free carer tickets etc don't require someone to be "registered as disabled" just to have a proof of receipt of disability benefits.

The problem is you can have a health condition and not consider yourself disabled and others with the same health condition might.
I have a health condition I dont consider myself disabled. But others with my condition might.

I meant my son gets DLA and I was told if you get DLA or pip you are registered as disabled.

there is no disabled register. And many disabled people do not qualify for for either.

also, the same condition can impact on some very mildly and can leave others severely disabled.

It's not black and white.

I feel like self diagnosed people are just piggybacking on the work done by those who are diagnosed. They want all the protection and benefit while diluting the very diagnosis they are saying they have. It’s particularly difficult in the case of autism as such a huge proportion of the autistic population are so very different from the self diagnosed cohort and so very overshadowed.

Some people do self diagnose on very little basis. I know a young man, never had any interventions, nothing ever raised at school, nothing noted by his parents, or wider family...tells everyone he is autistic. Never sought any medical intervention for it or a formal diagnosis, he just "knows" he is and that's that, and he told his work as he feels he needs a long list of accommodations. Which they give him as they can't not.
He can't be the only one.

@SurvivalIsInsufficient

Some people do self diagnose on very little basis. I know a young man, never had any interventions, nothing ever raised at school, nothing noted by his parents, or wider family...tells everyone he is autistic. Never sought any medical intervention for it or a formal diagnosis, he just "knows" he is and that's that, and he told his work as he feels he needs a long list of accommodations. Which they give him as they can't not. He can't be the only one.

I doubt he is. There's a lot of jealousy around the perceived benefits of having a disability. Many able people don't see a reasonable adjustment as levelling the playing feel, they see it as an advantage. I've even had a friend arguing with the school because her child wasn't getting the same support as my son got. Despite knowing my son is autistic and her usually being quite rational. She just kept saying, 'but my son's special too'.

Because it really is that simple

The process is quite simple. I appreciate people don't get what they think they need following that assessment.

It is an interesting thread.

I am still trying to get to grips to whether I am disabled or not. I don't feel disabled, my neurological condition makes me feel unwell atm. My legs hurt, I am so tired etc

I have been told as I get PIP, I am disabled. As in order to receive PIP, your conditions meet the criteria for disability.

However I use to get a low award for deafness/hard of hearing and bowel incontinence and I wasn't disabled then. I managed stuff, as I had no choice and generally with hearing aid, lip reading and good continence underwear! I wouldn't have ticked the compulsory interview box on a form, I didn't need it.

However with my last condition, my life is a lot harder. Being numb from the bust down. I can only walk a few steps with a lot of effort and have a powerchair for anything further.

I still don't feel disabled. But now I get an higher award of PIP and an entitled to join the mobility scheme to get an adapted car.

I guess I have to tick the box on application forms, as even though I don't feel disabled or identify as disabled, I need to be assured there is a step free access, lifts and disabled toilets. As I need that in order to get into the interview room and to work there later. I am clearly unable to hide my chair in interviews!

My wheelchair frees me, from the mobility issues my condition gives me. But the world is not very accessible even when it wouldn't take much to be accessible. I can't think of my wheelchair as a problem, the only problem is that many buildings/houses were never built with chairs in mind.

I hope that all new building, housing ,offices and shops are routinely made accessible to all. If not, why not?

Maybe it is something I need to get my head around. Disability seems a hard label to accept. I still just feel like me.

Looking at the numbers of children with ASD as a diagnosis then there must be many adults with undiagnosed ASD, it’s one thing to believe you maybe but another to disclose on documents and that’s what self identification allows.

I'll never forget getting the letter which said that the only young people they were accepting for referral were those who were at immediate risk of suicide or severe self harm.

Looking at the numbers of children with ASD as a diagnosis then there must be many adults with undiagnosed ASD, only if you think that the proportion of people born with asd is constant. I don’t think it is.

This is an interesting thread and many thanks to Hettie for setting out arguments so clearly in an emotive area.

Perhaps comefromaway has already accessed help from the National Autistic Society as a source of information for her DD, but it also has information about getting a diagnosis for adults and explains GP responsibilities and what are your next steps if the GP refuses to refer you for a diagnosis.

www.autism.org.uk/home

I had always thought that self identifying as disabled was already a thing and it meant the same as "do you consider yourself to have a disability?" I see nothing wrong with that, you either perceive yourself as having one or you don't .

the issue would be someone with no disabling medical condition of any kind claiming they are disabled to get votes or a position in politics. A bit like someone pretending they are black so they can work for NACAAP.

I really don't see someone who hasn't yet received a diagnosis of autism or anything else saying they think they may be autistic as the same thing.

Telling a lie is when you are saying something you know not to be true. E.g. Someone with no autistic traits claiming to be autistic because it would give them an advantage somehow, maybe professionally or financially in some way.
@Comefromaway isn't doing anything like that and I completely understand where she is coming from.

the issue would be someone with no disabling medical condition of any kind claiming they are disabled to get votes or a position in politics. A bit like someone pretending they are black so they can work for NACAAP.

That’s the sense “self ID” has been used in in respect of transgender for the past few years , so that’s why it’s being read that way now.

@SurvivalIsInsufficient

Some people do self diagnose on very little basis. I know a young man, never had any interventions, nothing ever raised at school, nothing noted by his parents, or wider family...tells everyone he is autistic. Never sought any medical intervention for it or a formal diagnosis, he just "knows" he is and that's that, and he told his work as he feels he needs a long list of accommodations. Which they give him as they can't not. He can't be the only one.

Probably there are cases like this, I don't doubt it. But I would be cautious about assuming parents would always notice or support a child or adult child getting a diagnosis. My own parents were very adamant that I was just faking my symptoms for attention and refused to let me get any help because it would make them look bad. They were also part of a religious community who believed seeing professionals about disability was either showing lack of faith or it was some sin or curse causing the disability.

My own issues are now diagnosed and am getting the help I need to live in my own home but couldn't have done with parental support.

There are numerous posts such as being anxious and claiming they have anxiety disorder or “everybody is a little bit ASD/OCD” and it’s a general consensus that this is wrong. Under self identification people who view this are able to tick the box and who is to argue.

“That’s the sense “self ID” has been used in in respect of transgender for the past few years , so that’s why it’s being read that way now.“

Except identifying or considering yourself has been used in disability terms for much much longer.

It’s always about letting people decide if whatever it is that applies to them that does usually qualify as a disability is one in their case.

It’s not the same as self ID for other things.

People who self diagnose as autistic may well actually be autistic - but without medical evidence it won’t qualify them for anything where that’s being asked.

That’s why organisations like SWAN U.K. exist because even with undiagnosed conditions that definitely by anyone’s criteria create a disability and a medical trail showing that - it can be really hard to access anything without a diagnosis.

@tabulahrasa

“That’s the sense “self ID” has been used in in respect of transgender for the past few years , so that’s why it’s being read that way now.“

Except identifying or considering yourself has been used in disability terms for much much longer.

It’s always about letting people decide if whatever it is that applies to them that does usually qualify as a disability is one in their case.

It’s not the same as self ID for other things.

People who self diagnose as autistic may well actually be autistic - but without medical evidence it won’t qualify them for anything where that’s being asked.

That’s why organisations like SWAN U.K. exist because even with undiagnosed conditions that definitely by anyone’s criteria create a disability and a medical trail showing that - it can be really hard to access anything without a diagnosis.

This

100% this.

I'll save my ire and annoyance for those with no symptoms who are claiming they are disabled simply to gain an unfair advantage professionally or financially.

lExcept identifying or considering yourself has been used in disability terms for much much longer.

I suppose what I meant was the phrase has been contaminated because a lot of people - especially young people - only understand it in the trans sense, which is more akin to self-diagnosis.