To ask if I’m autistic?

[Thehonestbadger]

Obviously I know non of us are ‘the professionals’ but getting a diagnosis as an adult is next to impossible, or incredibly expensive. I have a DS who has diagnosed ASD, completely non verbal and very low understanding of the world and that’s how this came to light. It was suggested to me I may also be.

• I don’t struggle entering social situations or new environments (I rather enjoy that and appear to be an extrovert) but I can’t maintain relationships. I’m everyone’s best friend for a few months then it fizzles out. It’s like I know the script to a certain point and then I feel awkward and stop.
• I have extremely intense food habits. I restrict heavily, have ‘safe’ foods and worry about foods I’ve eaten endlessly and can make myself quite unwell over it. I can’t get my head around sudden changes and internally freak out. Today DH went to the butchers and told me he bought burgers for dinner, great. Came to cook them and he’d bought different flavoured ones…literally couldn’t even swallow it just ate flapjack for dinner instead. I’ve been to so many therapists about my food issues and non of them every know what to do with me. I had CBT- didn’t work.
• This is an odd one but I frequently find myself reminding myself to look people in the eye whilst talking to them, or mentally checking off social behaviours as I do them. I’ve always done this. It’s like I correct myself in my head. I’ve always loved acting and drama and a lot of my life feels like I’m acting out a rehearsed roll.
• When I zone out I ZONE OUT I mean you could stand in front of me talking to me and I’d not recall a word. I’m gone.
• I have an intense imagination. I can literally disappear into my imagination. No joke I can like step into a daydream and entertain myself for hours. When the kids go to bed DH will often be like ‘why do you just lie on your bed for like an hour if you’re not going to sleep’ and honestly it’s because I’m living my own story in my head.

I mean, I’ve worked my whole life, social and professional jobs. Have a house, DH and kids. Tbh it’s only the last year I’ve started to really notice how unusual these behaviours actually are.

I wanted to say that it’s really common for women to get diagnosed later in life .

it can really help to understand yourself better if you are diagnosed . This is the reason I am now waiting for assessment at 40 years old and yes I’m married with a home and family and so on.

YOU need to go to the gp and ask them to do a referral under YOUR RIGHT TO CHOOSE. It’s a new ish thing that will cut the average waiting time of 3 years to about 6 months .

google ASC assessment your right to choose

The last one of your traits sounds like maladaptive day-dreaming. I do that too and I love it - I create stories in my head that no-one knows about. I’m amazing and clever and beautiful and popular in all of them of course! Google it, it’s quite interesting. I can’t help you with the rest I’m afraid, or say whether this one is an autistic trait.

You definitely could be. I'm awaiting assessment and on the outside look very normal. Or at least I did until I had kids and could no longer hide/avoid triggers.

I'd recommend doing a few screening tests - AQ50, Cat-Q and ASRS https://embrace-autism.com/autism-tests/

I've already started implementing some strategies for managing some of my issues. Similar to you I've had oodles of CBT and none of it has worked. So far treating myself as having ASD and ADHD has given me a massively different way of looking at things. I'm finding things make sense and are explainable in a way that has never been true before. I'm also more predictable in a way I never was before. And have started managing my anxiety and panic attacks way better. For example using ear plugs and ANC headphones to manage my sound sensitivity has made a huge difference to how I'm able to cope with situations that I found impossible before. It's been really eye opening.

Prior to this I always just beat myself up and attempt to try harder next time.

I've found that me and DH definitely communicate much better too. He's always been willing to help me, but I didn't know what to ask for and he'd get frustrated when there wasn't a reasonable explanation. It's so much better for both of us now. We're both able to be much kinder and more empathetic to eachother cause now things actually make some sort of sense.

@Thehonestbadger These may (or may not) be helpful to try these online tests out and see what they suggest (I tried the CAT-Q one because whilst I have some traits, I would not consider myself autistic - pretty sure my DC's autism comes from DH!).

https://www.autism-assessment-online.com/blank-page-2

@Curiosity101 snap lol! I got sidetracked doing the CAT-Q test so didn't know you'd posted.

Some of what you said sounds like autism but some of it doesn’t. Nobody can really tell you except a trained specialist. Even the GP can’t really tell you. They chat to you and do some questionnaires, and if you tick the right boxes they refer you for a proper assessment. You need to see your GP and get referred.

Re. Right to Choose. That means if the GP has chosen to refer you, you can choose where you get seen. It doesn’t mean that the GP must refer you. You can’t insist on a referral, that’s still at the GP’s discretion. They won’t refer you unless they think you are actually autistic. However, if the GP decides that in their professional opinion you are autistic and refers you, then you can use Right to Choose to pick an option with a shorter waiting list.

Are you my daughter? ! (No I know you aren't but you just described her to a T)
My dd1 has ARFID and has since babyhood (and semi resolved anorexia... very limited number of 'safe' foods, high anxiety, good surface social skills, highly rigid in her thinking, and utterly lovely.
She is in a professional career but has been medicated for ADHD , and anxiety, for many years. She was offered a formal ASD dx at Uni, but didn't go for it as didn't want more 'labels' . She IS autistic. As is her brother DS2 who is much more impaired ( diagnosed when little) but still very similar. She disappears into books but has aphantasia (as do I)
My grandfather almost certainly had ASD. And I have way too many traits.

I don't think it hurt to pursue a diagnosis if you wish, but I don't think if you are able, and cracking on with life, it confers much benefit really (this is my personal opinion mind, not saying it's correct) I think it's vital for those whose impairments mean they will always need support (as my ds2 does, and yours) but not sure it matters to have outside confirmation really otherwise.

I've been wondering the same about myself.

My brother has been diagnosed as autistic, and his four children.

I think I've been exceptionally good at masking, I know as a child I would just copy others. I think I'm okay socially, as long as I have a script in mind.

I find eye contact painful, and have a few 'quirks' like lining things up but they have to be 'heavier' on the left, and I have to put left socks/shoes on first. I eat exactly the same breakfast and lunch every day, and rotate 4 dinners. Never get bored of that.

I am very sensitive with noises and smells; 'bad' noises and smells really affect me.

I look 15 years younger than my age (might catch up with me at some point?!) I'm rubbish at keeping friendships, it's such hard work, even though I want to, so I feel lonely a lot. I hate being watched, I feel on show a lot, like everyone can see I'm doing things wrong.

My DH is autistic and although he's very different to me, I feel I really understand him and have a lot of patience.

I don't know if I am autistic, or if my personality happens to have a few autistic traits, but I'm starting to feel like whatever it is, I need to start accepting myself and not try to 'get over' my anxieties anymore - I'm just me!

You sounds like my DH. He is autistic. Very capable at work, focused on his job, he is in IT. He is diagnosed 4 years ago after my DS diagnosed with asd. Because of my ds diagnosis my husband wondering himself if he also asd, so we went private.

To be honest there is no difference before or after diagnosed, so dont bother to pay for diagnosis imo.

I’m also a sufferer of ASD, and unfortunately reprogramming your brain just isn’t something that can be done - there’s lots of coping mechanisms and strategies to help, but your wiring will be very much ‘set’.

There’s a lot of help out there - support groups and therapy are my weapon of choice!
Good luck in your journey.

I LOVE your description of your ADHD having a lovely time running free. I’m not yet formally diagnosed AuDHD but hard relate… loved lockdown a little bit too much!

@Thehonestbadger I’m in a similar position to you but have already decided to have an assessment. Food is one of my stims and I love variety but I do have multiple sensory issues which I’ve found harder and harder to cope with and conceal in recent years. Work are being massively supportive of me but I feel I need diagnosis for validation: I’ve spent 44 years trying to figure out the world and my place in it and I just can’t keep going the way I have been. As someone else said upthread, I need to feel I can justify not doing things that I can’t really cope with. And also, I need the fact that I’m not a crap adult rubber-stamped as I’ve certainly felt like a crap adult in recent years 😔

I've got some forms from the dr to fill in and ive had them about 6 months as I'm scared of getting them "wrong."

For example a friend I work with (who also thinks I'm autistic and is lovely) I said "but I can make small talk - I'm good at getting to know people and making connections etc." She said "Tigger - I have never ever had small talk with you - your "small" talk is always leading to something deeper, never about trashy tv etc.

Also - liking social situations - I thought I did. She asked me to describe the social situations I like. "Ah, so situations with people you know or where you have a role/control.... what about if i invited you to a loud party/ disco/ clubbing" er....

Similarly change. I think I like change. Her point "hmm I think you only like sponteity when YOU decide to do something... what if someone else changed the plan/ didnt turn up on time/ moved the date etc. Ah yes...

I kind of need someone to decode the questions so I can answer them as with my autistic head on I answer them all wrong! I think I do do things "right" its other that have the issues ;)

I hate this attitude!! It's not a label - it's about understanding yourself and your difficulties. It helps to know.

For example - on that set of tests the middle one asks about empathy and compassion. I think I really am empathetic and compassionate. Incredibly so! But sometimes I read the situation wrong so maybe it doesnt appear like that...

So everyone does that and the waiting times goes up to 3 years ago?

The small talk sounds normal...

You know yourself best @TheWonderfulThingAboutTiggers . You don't need your work colleague to analyse you. Don't overthink the forms is my opinion

Barring the food issues, that just sounds like most people.

Well, autistic people can have jobs and houses, children and spouses!

Have you been referred for diagnosis?

Autism often runs in families and what you describe could be traits. Ultimately the only way to know is to go for assessment.

The triad of impairments in autism - one of them is a lack of imagination. If you're constructing narratives in your head, I doubt you would fall into that category.

Do you have any references? Are you thinking of social imagination?

If you're thinking of social imagination, that's not what the OP is describing.

Yet there are fiction writers with autism. It all seems too confusing to me.
I am also a fiction writer, very good imagination, see things from all perspectives and don't mind change but am also a very anxious person, struggle with eye contact, looks decade's younger, odd voice etc.
All very confusing.

@TheTheWonderfulThingAboutTiggers Overthinking the forms sounds a pretty autistic trait to me!

I had a form from my gp. Can't remember the name of it but it only had about a dozen questions.
He had to send it off to a local centre where they would decide whether it was worth sending me for the assessment.

I was scrupulously honest and came out with a borderline score.
I added a couple of pages of my own notes cross referenced to each question. Basically "I answered no to this if you mean x but on the other hand I do y"
With hindsight, the way I completed the questionnaire probably told them more than my actual answers.

The questionnaire for my full assessment was pages long. It really annoyed me. You were supposed to give yes/no answers but the questions weren't nearly precise enough. I ended up having to scribble extra detail all over it.

When I handed it over to my assessor, she took one look at it and said that it told her a lot.

I didnt express myself well at all sorry - I mean some of the questions are written from a neurotypical perspective, so an autistic may say "no I dont have issues with xyz " but its because they do abc...

It is late and I'm not coherant. Of my children one is diangosed autistic and the other has a lot of sensory issues. I am pretty sure I am autistic and actually even wtih the caveat of misundestanding the questions scored highly on all 3 on the linked page -so will use that to help me fill in the questions.

Its a bit like asking you what you do that's abnormal - when what you do, to you, is normal. It takes a lot of self awareness to be able to first realise and second articulate the difference. One of those series of quizes talks about "imagining people in stories". I have never been able to do that. I have prosopagnosia and am very "face blind" so can't even imagine people I know! I can't really imagine much in terms of an actual picture and it was years into adulthood when I realised other people found recalling what their family looked like to be normal...

A bit like I didnt know I needed glasses as didnt realise my vision wan't "normal."

I do know other people view me as odd at times, I have sensory issues and struggle with change/need to endlessly research anywhere I go. I have a lot of coping techniques I thought were "normal" until going through my daughters diagnosis with her. I am just like my daughter!

@cariadlet that's it exactly! I need to just get on with it and type up some answers along with the "if/buts". In my head I need to research "everything about autism" so that I dont miss anything out that might be evidence even though I think its normal.

I need to get on with it and do what you've done.