I'm autistic, ask me anything

[AyEssDee]

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Apparently I had lots of "angry outbursts" (meltdowns) as a toddler. I struggled with social interaction but was quiet and introverted so was just given a "shy" label I suppose. I kind of zoned out and daydreamed a lot.

I had obsessive-repetitive behaviours (like counting steps / syllables in my head). Still do that now.

Trouble with transitions / sleeping.

Was "diagnosed" on a whim by a paediatrician with "hyperactivity" and prescribed Ritalin aged 4.

I was always that slightly odd kid that was a bit different but not different enough iyswim. No academic problems though, I only fell apart from age 13 onwards (classic in "high functioning" girls who go undiagnosed).

Thanks for the reply AyEssDee - interestingly my friend is being investigated for ED - although given the slowness of their local health facilites, it's going to take some long time to find out.

in reply to Bridget early on

The private diagnosis was in the form of a DISCO interview. The application form sent in by me previously, in which I had explained at length the reasons why I wanted an assessment, was taken into account.

The whole process took
about 4-5 hours.

Absolutely no after-care available on NHS. There's possibly a little bit of counselling if diagnosis is done through NHS, but even then I hear there's often none.

I was prescribed Citalopram by my
GP when I explained my diagnosis and anxiety/depression. GP was/is lovely but that's all there is.

Thinking about private counselling.

I am also (diagnosed) autistic and have ADHD. DS1 is also diagnosed, and DS2 is on the neurodevelopmental pathway. Just saying hi to a fellow autistic with autistic children!

Hi, big wave back!

It really annoys me that I misspelt eccentric as excentric above. Why is there no "edit" button? 🤓

The thing I've found about looking into private counselling is getting recommendations. Any old bozo can set up and say they have whatever experience but the could be hopeless.

agreed, Tobee - thank you

Hi! Thanks for doing this? How do you feel about the common assumption that people with autism lack empathy? Do you feel you use or need coping strategies? What part of social interaction is the hardest for you?

I'm Autistic ask me anything? Ok. My son is autistic. 18. Totally non verbal, still in nappies, wets and soils himself and needs changing several times a day. Continually self harms, he batters himself black and blue. Will attack people if he's scared. He'll never say his name, know what Christmas is or his birthdays, he'll never go into a shop and buy a loaf of bread, live independently in any way, he needs 2/1 care round the clock. Wears ear defenders 24 hours a day to try, in an attempt to stop a sensory overload. He constantly stims and rocks all day long. He will never have a girlfriend, get married, have children. He wouldn't be allowed to board and airplane. He needs dressing, washing and his teeth cleaned by someone, he can't shower himself, He was formally diagnosed at 2, though we suspected it at 18 months, it took 6 weeks of being studied by a panel of health experts to get a formal diagnosis. The NHS have been amazing. He cannot, legally, make decisions for himself, this has been passed over to me. He is a 6ft 2in man with the mind of a toddler. He needs a Houdini harness to strap him in whilst I drive him, to stop him attacking me.

You say you are Autistic, so on paper you both have the same diagnosis. Do you think that is right?

Ps. He cannot read or write, obviously.

Hi fieryginger.

I cannot imagine how hard it is for you to look after your son, how hard life must be for him and how much you must worry.

Of course I don't think I'm in the same boat.

Yes, I say I am autistic because I have an official diagnosis of "Autism Spectrum Disorder (Asperger's Profile)", aka high-functioning autism, issued by a leading and highly respected clinician.

I'm sorry if I've offended you in any way or if you feel that somehow people with Asperger's like myself who post about their experiences on social media and try to spread awareness are trying to diminish or belittle your personal experience (I don't know for sure if that's how you feel but it's a view I've come across from NT parents/carers of "low-functioning" autistics).

Hi! Thanks for doing this? How do you feel about the common assumption that people with autism lack empathy? Do you feel you use or need coping strategies? What part of social interaction is the hardest for you?

Hi NCPuffin.

I think that assumption is wrong. You could argue (and there are some interesting articles / blog posts on the subject) that there is a double empathy problem, ie NT people have a hard time empathising with ND folks and vice versa. Two-way street.

Personally, I am super-sensitive and have lots of empathy/sympathy but often struggle to show the correct (NT-acceptable) response. My facial
expressions can be off or I might say the "wrong" thing, which can then be misinterpreted.

I definitely need coping strategies and lots of down time by myself, especially after lots of social interaction. Even meeting up with a friend can exhaust me for days (camouflaging is hard work).

Social interaction is hardest when I have to talk to more than 1 or 2 people. Totally overwhelming.

I also seem more put together when I write than in real life!

you sound alot like me, but any online tests ive taken have said a diagnosis is unlikely.

(i count things like steps - always in 8s or 4s. i feel “different” from other people, i cant hold down a job as they all feel meaningless. i have two degrees but havent managed to get a job with them yet because of how i feel. i am introverted/HSP and hate loud noises, disruption to routine etc)

how do you tell the difference between your presentation of autism/aspergers Vs just normal personality traits?

You haven't offended me at all, though maybe putting you have Aspergers in the title would've been more accurate.

I've been around Autism for 18 years, all kinds of Autism. Most of the parents I'm close to have kids with severe Autism and it bothers us all that our kind of kids are not represented and it bothers me more because our kids, literally, don't have a voice, it's swept under the carpet, it's really hard to look at.

I think, as Autism is a spectrum, it should be graded so you know exactly how Autistic a person really is.

You should go on over to the NAS webpage or google the triad of impairments.

Does Aspergers still exist as a diagnosis?

Hi, OP. We are in process of getting DD12 assessed for what we think is Aspergers. We are told by the psychologists that there are no longer Aspergers diagnoses, but simply "degrees of autism" diagnoses (as per DSMv I think? this is all new to me).

Our DD has no educational deficits but quite a few social ones, some of which seem to have improved a bit over time. I have been waffling about this diagnosis for some time but I would like to hear from you: what do you think would have been different in your teenage/young life if you had a diagnosis?

Does diagnosis without a multidisciplinary panel still exist?

Aspergers is a syndrome.

www.autism.org.uk/about/diagnosis/adults.aspx

Thanks, fieryginger.

You seem to imply my diagnosis isn't real. "Asperger's" isn't a separate diagnosis any longer. My diagnosis is valid, I know about the triad of impairments, I was assessed and diagnosed at the Lorna Wing Centre, which belongs to the National Autistic Society to which you've posted links.

A multidisciplinary approach isn't needed for cases like mine.

www.autism.org.uk/services/diagnosis/professional-team/dr-judith-gould.aspx

In my daily life, I am actively trying to promote autism awareness. This includes the entire spectrum and also those who aren't able to communicate as well as I am as a "high-functioning" autistic.

Nandocushion:
Receiving a diagnosis much earlier would have helped me put a name to my differences and ideally would have enabled me to have accommodations put in place at school (sensory stuff and extra pastoral care) and possibly the workplace. It might have equipped me with appropriate coping strategies earlier on and saved me from, or lessened, my eating disorders and some of my mental health problems. I completely fell apart as a teenager, it's a common theme in undiagnosed girls.

Happy to give more information by PM.

Ps. He cannot read or write, obviously.

Fiery, our sons sound very similar with my son being a lot older than yours. My son can read and write though, at about an age 6 level, and he’s not in nappies. He also has a form epilepsy that causes violent and agressive outburst towards himself and others. And if that wasn’t enough to contend with he also has Tourette’s and additional mental health issues. It all means he requires 2-1 round the clock care with a third person always being in the vicinity. In fact we always have 4 people at home at any given time. Oh, and height wise he’s 6’3”.

I don’t mind that the OP has said she’s autistic. She is autistic. And it’s obvious she’s HF. Honestly, I don’t think it needs to be pointed out in the title though I do understand why you’d like the distinction made.

Op, my son was diagnosed by Lorna Wing and Judith Gould more than 20 years ago. Like you we went privately and in our case it was because we live abroad. I can recall standing in the kitchen of the then Elliot House doing the dishes with Lorna Wing and her saying, it’s such an obvious case of Classic Kanners Autism that I could have diagnosed him on the doorstep. I was so relieved to hear it I stood there saying thank you, thank you, thank you. 😂

Did you know that Lorna Wing had a daughter who was Autistic and whilst her and her husband had trained as Psychiatrists it was their daughter being Autistic that made Lorna in particular devote her life to Autism?

Do you stim? I often rocked back and forth as a child/teen, I didn't even know I was doing it. I would even do it when I was engrossed in a book or TV, that or jiggle my knee. I hated my hair hanging round my face, and would sit with my hair clipped up on top of my head, and the hood of a hoody pulled up, at home. My mum used to tell me off for both, and say it was weird, (and the chewing holes in the sleeves of all my jumpers). She admitted recently she probably should have had me tested (I check a lot of boxes on all the tests, always felt like the odd one out).

I know some non autistic people stim, I think I'm one of these. I don't do it very often now, but if I get very upset, I still rock.

What were your top five "symptoms"?