I'm autistic, ask me anything

[AyEssDee]

I think X is on the spectrum, he definitely lacks empathy

I prefer to say impaired empathy.

We are not all on the spectrum somewhere, that is a major inaccuracy that gets bandied around waaaaaaay too much.

Yup, I know that it doesn't work that way!

I suppose the misunderstanding WRT empathy just goes to show how much misunderstanding there is among NT people about ASD

I’m sure my DN has HFA aged 15. The list for this is:

Late walker.
Speaks with an unusual accent.
Can’t ride a bike and general poor co-ordination. Poor at sports.
Bowel problems.
Can spend hours doing 1 activity alone.
No friends at all and doesn’t seem bothered.
Autism runs in the family.

Her parents won’t have her tested and I don’t know why. I’m worried about DN and how her life is going to progress, particularly her inability to be independent.

I know you’re own situation is different, but would you have managed to go to university, given the chance with good grades?

I suppose the misunderstanding WRT empathy just goes to show how much misunderstanding there is among NT people about ASD

People were told for a very long time that those on the spectrum lacked empathy. They were told this by the very people who were world authorities on autism. People who then moved the goalposts a bit and said ‘hang on, we want to revise that’.

As a parent it takes me a lot of reading to keep abreast of things, in fact I no longer read very much because I know my son intimately and as long as I’m well informed about him I’m content. I understand why the general public aren’t ‘up’ on all the latest thoughts on autism and it only takes a couple of minute to kindly say actually, re empathy, these are the latest thoughts.

JamesBlonde1

I do hold a master's degree now (from
a UK university).

I grew up in another country in Europe (don't want to say which as I may out myself on here even more if I do) with a different schooling system. I left grammar school at 16 with GCSE equivalents and then continued on a more vocationally oriented schooling path, which did give me proper qualifications but not the "proper" university degree I had aspired to before (eg law, medicine, or economics).

With the right moral support from my parents, yes, I absolutely could have gone to university at 18/19 had I not had that major crisis in my mid-teens.

aren't girls with aspergers (and some boys, idk) sometimes hyper-empathetic? Wouldn't Chris P's bond with the kestrel he lost be a version of that, or is that not right?

So it's more about not being able to express empathy with conventionally acceptable phrases isn't it?

FWIW, I am a woman diagnosed by the NHS as having Asperger’s syndrome. I have excellent academic qualifications and do a very senior job that I find hilariously unlike what the stereotype of autistic people would predict.
I think I’m logically empathetic (e.g today I thought ‘colleague A is stressed and not behaving appropriately; I will take A aside and let her vent; I will identify the issues and work to fix them; I will make appropriate people aware of the issue’) which is actually probably very useful. I have a reputation at work as honest, highly competent, unintimidated, genuinely caring and very discreet, which are probably actually Aspergers traits.

Thank you, that’s reassuring and good to hear.

Colditz. The point of AMA is just that. Have you just popped on to shit stir? Have you contributed to this thread in any way, other than to post to me?

You have no idea. Zero.

I don't mean to hijack the OP's thread, but I feel I need to come in here.

I don't have a diagnosis of Asperger's, I have a diagnosis of Autism Spectrum Disorder. I also detest functioning labels: a person's IQ is not related to autism, though many autistic people have a comorbid learning disability. Functioning labels are literally based on whether someone is verbal, and/or whether they have a learning disability. There are many autistic people classed as low functioning who actually function really well as long as they can use an alternative form of communication, and many classed as high functioning who have been sectioned because they've tried to kill themselves.

I am autistic, I have autistic children, and work with autistic people. In reality, functioning labels don't help anybody. 'High functioning' people are expected to continually mask and fit in with society. Average life expectancy is reduced, generally due to suicide, and most have mental health issues (it's estimated that at least 72% of autistic people have a mental health condition.)

'Low functioning' autistics are underestimated. Many are written off as 'they'll nevers' and all are compared against a typically developing person for achievements rather than against themselves.

Something I want you to think about:

You have an adult who can't verbalise thoughts when they're upset, has screaming crying meltdowns, self-harms, forgets to eat and drink, freaks out in supermarkets, needs reminding and support to take medication, cannot reliably prepare and cook a meal, and is unable to remain in traditional paid employment. Not really functioning too well.

You have an adult who volunteers as a peer support worker, who is a single mother to two disabled children, who pays the bills on time every month (on direct debit, but shhh ), has a (non-live-in) boyfriend, writes, and is on the PTA. Functioning pretty well!

They're both me. Everyday. Always. (other than the self-harm at the moment)

I have had several suicide attempts, was a prolific self-harmer, go non-verbal at times, and have regular meltdowns. I am incredibly academically intelligent but cannot write a shopping list and follow it. I will yell from rooftops that functioning labels mean nothing.

If you have a child as significantly disabled as some mentioned here, it's not 'just' autism. There are other things going on, including profound multiple learning disabilities, and that is not part of the autism diagnostic criteria, they are in addition to.

Thanks for that, HugAndRoll. Well put.

I will yell from rooftops that functioning labels mean nothing.

I dont agree that they mean nothing but I do have a long held belief that those who are said to be HF can in fact have a greater disability than my son does for e.g..

There are other things going on, including profound multiple learning disabilities, and that is not part of the autism diagnostic criteria, they are in addition to

When my son was diagnosed he was diagnosed with Classic Kanners Autism. Its a diagnosis that suits him very well and one that I wont ever stop referring to regardless of what others have decided his autism is going to be described as this week or the next. And It probably helps that anyone who deals with my son on a professional level is handpicked by us to be in his life and they're not going to be saying to me oh, its autism with mild or moderate or severe leaning difficulties nowadays. When Classic Kanners Autism is mentioned they know exactly where we are at.

What does it feel like when your senses are overwhelmed? My daughter has diagnosed SPD and probably ASD level 1 /Asperger's or whatever the terminology is at present but we are waiting for an assessment for that. I've heard it described as physically painful; is that true? I appreciate we are all different but what would really help you sensory wise if you could change something about your environment?

Thanks

I don't feel it as physical
pain - just feel my stress levels increase and get super irritable (worse when ill or tired or already frazzled). I guess - imagine you're supertired and hormonal and then someone does something you absolutely can't stand...

But yes, I imagine, some feel sensory overload as actual physical pain.

My child has massive clothing issues, but from what I can tell they are similar to me in that's more of a super-magnified discomfort combined with a kind of red mist (meltdown) that makes them lose control leading to crying and screaming, rather than actual pain.

Well said hug.

"Ask me anything" doesn't mean "yes you can be as rude as you'd like".

Now that you are diagnosed, do you feel like you'd have to hide it in order to get a job (if you weren't SE)? As preconceptions of what people with autism can or can't achieve are so strong still and competition is fierce to get into work?

"Ask me anything" doesn't mean "yes you can be as rude as you'd like".

I can’t put this into the context of Hugs post. Was she replying to someone who had been rude?

Ah ok. I’ve understood now.

zzzz Verbal capability was the defining difference between autism and Asperger's when they were separate diagnoses, with Asperger's being (now) "high functioning." I completely agree that you can have high IQ and be non-verbal, I state that in my post. I also agree that the pure version of people using functioning labels relates to IQ, but it means that people labelled as "high functioning" are expected to function just like everyone else, and most people do not accept that someone can have poor functioning skills when classed as "high functioning."

If we're going to be super pedantic, functioning labels have never been a diagnostic tool, label or criteria.

Flora I agree that previous diagnoses shouldn't be changed. If someone has been diagnosed with Asperger's, it still stands. I just reject people telling me I'm not autistic when two psychs and a professor in neurodevelopmental science say different. It's one of those things where everyone's had to meet in the middle slightly to assist those with Asperger's/verbal autism with no learning disability for the reasons stated above.

I agree, zzzzz which is why I'd love for the language to be changed as people don't like educating themselves.

:( I hope I didn't come across like that. One of the other reasons I don't like functioning labels (as per my big post) is that it means people underestimate those with a LD.

My youngest son is being assessed for autism (he also has other disabilities, one being possible EDS). When he was younger there was a concern he had a LD as he scored very low in the cognitive ability section of the SOGS, and was very spiky on his Ruth Griffiths. He has since demonstrated he doesn't and has made significant progress, but that doesn't mean his worth in society is higher now, or that his voice is more worthy of being listened to, but realistically I know that's what happens.

I only work voluntarily, but some of the children I work with have LDs alongside autism and other disabilities. Although I'm sure I already do this, I will ensure I work harder to make sure their voices (whatever form they may be) are heard, elevated and listened to. Regardless of my struggles (of which there are many) I am still in a position of privilege, and I need to use that privilege well.