DM not acknowledging she did have a disabled DC

I think ASD is often referred to as a disability. It’s not a description that comes naturally to me as the people I know on the spectrum can be different in ways, but for several of them they actually have quite remarkable abilities. So it’s not a description that feels very useful to me knowing them.

I wouldn’t worry too much about this actually. They will make their diagnosis snd if it seems she is oblivious, that will be obvious to them. This won’t be their first rodeo with people like your mum.

My ‘D’ M told me for years she refused to accept my label (ASD). A few years ago when I mentioned dla for one of my dc with ASD she exclaimed ‘if I’d known I could have got money for you I’d have been fine with it !’ Wtf

Why do you believe this, from what expertise do you have this information?

I don’t think your mum is being unreasonable.

She might just be saying, some have it harder than others.

My friend has a child with complex special needs, she at times has said … that mum with Downs Syndrome child is so lucky. And she means it.

This friend has a lived experience which is really a challenge- who am I to judge her for her thoughts on Downs vs other disability.

You're not disabled!

Is your husband your carer? I think it's a bit off to compare an off hand comment about coping with a disabled personwho needs feeding and caring for in the same way that a young child would who cannot communicate much verbally and an adult who has children who lives with their husband and can advocate for themselves. Yes autism is a disability but not all people with autism are disabled in the same way.

I agree. Hence my point earlier that young women and girls 'successfully' mask their ND and as my own DD told me recently it was only once out in the big wide world away from school and uni that she began to find aspects of life almost intolerable. Having said that she doesn't see herself as disabled, just different. She is high functioning.

Because it’s her mother. The first, strongest and sometimes most painful relationship. It hurts not to be seen and understood by your own mother. That pain never goes away. That’s why it matters.

Exactly this @berksandbeyond

@Jimmyneutronsforehead I've just reached exactly the same point. I've gone from a high-flying professional role to PIP and UC, CMHT, CPN and EMDR. Can't quite believe it. And largely because I was never "allowed" to be neuro diverse (I'm also ADHD and dyspraxic).

It really isn’t. In fact, it’s pretty typical for someone who is wrongly thought of having ‘high functioning’ ASD to have a harder time with life post school. Whilst the social aspect of the school years are certainly harder for ND children, they usually (not always) thrive better with the firm routine it brings. Once you’re in the flux of adult life with higher expectations of using executive functions, that’s where those who seem ‘fine’ in their earlier years tend to breakdown. A lot of children not diagnosed or diagnosed with Asperger’s/Level 1 ASD are let down because they seem to be able to ‘get on with it’. Often these are the adults you see with depression/anxiety or even substance abuse/homelessness on a more extreme end who were let down because people assumed they were ‘coping’. Autism isn’t an intellectual disability, the high reliance on the ability to function socially is where the disability of autism comes to the forefront.

My DM is just the same. She much prefers to view me as difficult and lazy rather than autistic. I have the final stage of autism diagnosis later this year. The autism service want to interview DM about how I was as a child. I know she will tell them anything other than the truth, as she doesn't believe in autism unless it's extreme and non-verbal, so it should be interesting if nothing else. I feel you, OP 💐

I'm very sorry 😞

There's little to no help for autism.

The fact is even without a diagnosis you would still be autistic.

You still experience trauma harder than NT peers.

Your mum didn't make accomodations or advocate for you, she tried to make you fit neurotypical normative standards. That is a massive cause of trauma for most autistic people, at school, at work, in relationships.

It's unfortunately the case for most low support needs individuals and it leads to us having higher support needs.

For me, it was work that lead to autism burnout. I can't work like a neurotypical person.

Now I feel like I can't work at all.

Your mum should have treat you better, diagnosis or not. I'm sorry she didn't embrace you for who you are and what your needs are.

Very true. Dd's husband is on the autistic spectrum. He doesn't appear to have empathy to me and yet his child (also on the spectrum) does appear empathetic.
Note how few posters mention that autism IS a spectrum. I was told by a psychologist it is a very wide one and each autistic person is different.

The same as one of my grandchildren. I do worry for his future but he has an understanding family who will give him the support as and when he needs it.

This is what I was attempting to say, only written much more eloquently!

I don’t know OP, I wonder if she is thinking of disability in certain terms.

I have very severe ADHD and my mum would never refer to me as being a disabled child because I think the term simply doesn’t fit the experience, if that makes sense. But it is technically a disability and it’s very life limiting in many ways.

Not all of us. I do not lack empthy myself, not does my child who is on the spectrum.

My parent is the same. I am autistic and have a life long physical disability too and they are always saying to me "there's nothing wrong with you" which I always used to believe (despite regular medical intervention, invasive treatments, trouble doing things etc!!) and thought I was just being dramatic, thats what I was told for so many years. I think it's more they don't want there to be anything wrong with me as it would be inconvenient for them to admit or deal with in any way, they want an easy, well, competent child with no problems as I think they see me as a reflection of their potential failings or weakness. I have very strong suspicions they are also autistic.

That was my first thought.

Lots of people tend to think of “ disabled” as a physical thing only. I don’t think it’s intended to offend, just a nomenclature thing. And autism is different from a physical and very visible disability that requires physical assistance with mobility issues.

Charming. That's what you get from my post?!

Autism is not always disabling though… which is probably the way your mother views it . There are many autistic people doing amazing things in high flying careers who likely don’t view their own autism as a disability. It appears that you don’t have a severe intellectual disability, which is probably what your mum means in your context. I say this as someone who cares for an autistic person, however he has significant learning disabilities and does not understand the dangers in the world around him he gets full rate pip like yourself, but if you were to ask him if he has a disability he would say no because there are so many things that he is better at than the average person. Eg memory etc

My sister has autism and a carer. But she doesn't see herself as disabled at all.

Im 62 and when I was a child it was very common for people to put their disabled children into institutions as it wss considered shaming. We dont tend to do that now.