How did you know if you had autism or weren't neurotypical?

[Opaljewel]

I'm not sure if this the best place for this topic but there is a lot of traffic here.

I'm doing a lot of work on myself and trying to figure myself out. I have an actual diagnosis of anxiety but sometimes it feels more like I get overwhelmed or sensory overload in situations.

A neurologist once touched on aspergers but I didn't think he was correct.

However on talking to a friend of mine online who is autistic, I've been doing a lot of soul searching trying to find out why I do the way I do things and how I can help myself.

I'm still unsure if even getting a diagnosis will help me or even if I am on the spectrum. I am also aware that not everyone experiences it the same.

However I feel like it would really help me to hear from people with disorder, in particular women. May I please ask what were you like as a child or were you diagnosed as an adult? Did the diagnosis help or hinder you?

Also if I've used any wrong terms or said anything in an offensive way, I apologise. I'm just still learning and trying to get things right. Thank you.

I am about to put myself forward to be tested. I didn't ever consider autism until my DD was diagnosed at age 3 two years ago.

• I have never 'got' other people. I have a small number of close friends from childhood and don't make new friends easily and can't cope in big groups I feel totally overwhelmed. 3/4 is my maximum
• I was 'naughty' all through school. Bright, able, did really well in my exams but constantly disruptive and sent out etc. I would speak to the teachers as if they were my peers not authority figures, same with other adults. I was a self taught early reader
• I am hugely sensitive to noise, particularly conflicting noise (so tv on then DH plays a video on his phone - no!). It makes me want to rip off my own face
• I have sensory issues with food, I cannot tolerate certain textures. I've always just been called a fussy eater, but I have no problems eating quite weird things and eat a huge variety of foods. It's just a specific texture I can't manage, which is basically a whole food group. I also eat the same meals on repeat an awful lot
• I stim. Which I didn't realise until DD was assessed. I thought stunning meant jumping or flapping hands. Nope. Turns out my specific and repeated hair twiddling is a stim, I don't even realise I'm doing it
• I have always been called blunt, awkward, difficult, straight talking, and even rude, but I never mean to be. I just say what I mean
• I've always struggled at work (I no longer work because I'm a sahm). I am very competent, but the social aspect/networking required just boggles me so I do well but even after ten years at a company I left with no friends and keep in touch with no one. Working in an open plan office was hell for me. The idea of spending a lunch break with colleagues, or going for a drink after work? No.
• I am 100% routine driven, a change in plans has always thrown me and I have a tendency to just go 'no, I'm not doing that' if plans change for no real reason
• Again something I didn't realise but I don't really do eye contact. I do, I can hide it and maintain it if I really need to but it makes me uncomfortable and I tend to try to look at eyebrows or glasses or over shoulders etc
• I suffer with anxiety well and above just feeling worried if something bad is actually happening. I've already been diagnosed previously with GAD.

That's just off the top of my head. I am, I think, a pro masker. I spent my late teens and early twenties going out drinking a lot and partying, was a total show off, exuberant person. I can be personable, and sociable but it exhausts and irritates me. I do understand social rules because I have learned them, but honestly most of them I think are ridiculous and a charade. I only follow them to fit in. I managed to get promoted to mid-senior manager level at work by the age of 30 so I am capable, my work is good, but I work best by being left well alone by myself to get on with things and I found the person management aspect of my role terribly difficult.

So yeah, I think I am probably autistic! I don't mind if it turns out I am. It just means for me that an awful lot of things would make sense.

It took a long time to realise what was actually "wrong" with me. I was probably about 41, possibly 42. My son who was then aged 10-11 had had a lot of social and academic difficulties. I had touched on with his school if he might have ASD and/or ADHD but got fobbed off because a lot of his behaviour didn't fit with the typical ASD image (very gregarious, adventurous and wanted to be sociable).

I had another baby when he was 9 and within a year or two it was obvious how different they were (she is NT). I ramped up my reading about ASD and was almost shocked to discover how differently females tend to present and so much of it sounded just like me.

Son then went to secondary and within the first half term the teachers and SEN officer agreed with my suspicions and he was referred for assessment of ASD and ADHD. This took two and a half years so he was nearly 14 when diagnosed with ASD via CAHMS. Part of the process involved looking at family history and I raised that I seemed to have many of the traits myself. The consultants agreed and it felt like a huge relief. I also did the Baron Cohen test around this time and it came out as highly likely I had ASD.

My son then got a (private, as GCSEs were imminent) assessment for ADHD which also confirmed that diagnosis. After some discussion with the consultant I am having my own assessment for ADD on Thursday. I am not going to be assessed for ASD, although it is highly likely I also have it, because there isn't really anything that can be done about that now. (I am 47 and completed my education long ago.)

It has made a lot of sense of how I am and who I am, as I just could not understand why I didn't fit in and where I was going wrong, especially socially. I really wanted to be liked and have friends. "On paper" I seemed to do everything right but in real life I was slightly off wavelength nearly all the time and it puts people off you, sadly. Some examples:

Not realising if someone is talking to me or what they mean by their words (I hear the words but can't work out straight away if it is a statement, a joke, an insult or a question).
Not realising when it is my turn to speak, especially in a group conversation or on the phone (really HATE talking on the phone).
Can do small talk but hate it, seems so false and pointless. Sometimes I have pretended not to see someone because I can't face going through the same pointless rigmarole of small talk again.
Get very anxious about talking with anyone except those I know well as I either worry about getting it wrong or I am so anxious my mind goes blank and I can't think of anything to say. This then makes the other person feel uncomfortable and the whole cycle perpetuates itself.
Often seem to be "in a world of my own" or "in a dream".
Feel really agitated by things being out of place or losing my lists - multi tasking is a huge struggle.
Poor executive functions (time keeping and organisation though I have developed coping mechanisms: lists, reminders, alarms, being ultra tidy).
Fixating on certain things or issues and thinking of them over and over. I have to bite my tongue so I don't "go on" about these things verbally. (My son does this with his pet subjects.)
Feeling really misjudged. My mother has referred to me as cold, hard and uncaring but I am none of those things. I care about people and their feelings very deeply but I must seem very stoical on the surface and I am aware I miss a lot of social cues.
I don't make friends easily. Those I have made have been willing to accommodate my funny ways!

Oh yes, and stimming, reminded by the poster above!
I twiddle my hair, pick at my lips and cuticles all the time. I talk to myself under my breath nearly all the time, I don't realise I am doing it until it is pointed out (usually by my children who find it hilarious). I feel like my mind is racing along a million miles and hour and "talking" through it seems to help me slow down and keep focused. I still have a childhood comfort blanket, even at my great age.

@honeylulu

Oh yes, and stimming, reminded by the poster above! I twiddle my hair, pick at my lips and cuticles all the time. I talk to myself under my breath nearly all the time, I don't realise I am doing it until it is pointed out (usually by my children who find it hilarious). I feel like my mind is racing along a million miles and hour and "talking" through it seems to help me slow down and keep focused. I still have a childhood comfort blanket, even at my great age.

Ha, I am also (as well as being a hair twiddler) a cuticle and lip picker and nibbler.

You don't even realise what these things are, so you?!

Same here. I know that my mum does some of these too, so thought they were just habits I’d picked up from her.

Also reminded by PP, my executive function skills aren't great either. Which again, I didn't realise I just thought I was disorganised and lazy.

I get overwhelmed when I have too many things to do. So then I don't do any of them and avoid them. What I find helps is lists, and prioritising them. Breaks things into more manageable chunks of things to do.

Also something that I've noticed that is unusual (I think, for most adults). Most teenagers have messy bedrooms, right? I did, excessively so as in I'd be ankle deep in mess (not dirt, but clothes and general detritus etc). My wardrobe would always be just a pile of jumbled clothes, I was forever ironing and losing things. Well I could easily still be like that as an adult sometimes. The only reason I'm not is because I have a family. So I keep really really tidy instead because it's one extreme or the other.

Talking of clothes I wear very much the same thing all the time. In the day it's one 'uniform' for a night out another. Specific things call for specific clothes, and although I have six pairs of jeans, they are all very similar. Six tops to wear with the jeans. But again, all similar. Six pairs of boots, trainers etc etc you get the picture.

It's routine and ritual isn't it.

Out of interest I wonder how many undiagnosed women there are out there (sorry for minor derail OP). I'm in my thirties. There were no autistic girls at my school, not that I knew of anyway. There must have been (me included most likely). For me, as a child in the early 90s, autism was what boys had who were in the special needs class who threw chairs had, that was it. It's sad. I'm so glad times have changed, for our children at least.

Gosh, yes, just like Lucy above, I used to be horrendously messy right up to my late 20s. I found the idea of tidying and organising the mess really overwhelming, so it just got worse and I never tried.

I completely changed soon after I got married, we redecorated our flat and it was the first time I'd lived somewhere I wasn't just "making do" and I decided I was just going to have to keep it nice. i was also about to embark on a professional qualification that involved commuting to London and I needed be able to find stuff straight away in the morning and get out of the door in time. I completely switched to an ultra tidy person. My husband and kids moan that they can't put anything down for a minute or I will have put it away! It has become an essential part of my coping mechanism to have everything in its designated place. I feel like I am losing the plot if things become disordered or if more than a handful of things are left out because the prospect of a "big tidy" seems beyond what I can cope with especially now I have children to manage as well as myself.

Husband loves to tell people that when we met all my clothes were in a massive "floordrobe".

And yes yes yes to the "uniform clothes". Almost everything I own is black. Anything else seems to complicated.

@KateF

AnExcellentWalker I taught myself to read before starting school as well. My "thing" is remembering numbers - phone numbers, car registrations, bank card numbers etc. At work people are surprised that I know all the children's dates of birth, even ones I looked after years ago!

This is me too!!! I need to be tested. How would I go about this??

I was almost constantly rejected by groups and individuals and couldn't maintain friendships.

I hadn't really thought of ADHD/autism until I saw a private consultant for something I thought unrelated a few years ago.

It's worth seeing of any traits of ADHD make sense to you too, as they often overlap.

I got a priivate diagnosis frrom the consultant and then from the NHS- eventually of ADHD with autistic traits.

I'm still unsure if even getting a diagnosis will help me

I think it does, as it explains the course of your life, why you find certain things harder than other people etc. It helps you accept and forgive yourself rather than blame yourself.

It can also help in worrk and other contexts to help you access any extra services/support that might help you.

A lot of what people are saying shows the overlap between ADHD and autism and that they are often to some extent comorbid.

My place is a tip to the extent I don't really cook and I use paper plates and plastic cutlery.

I knew a guy I think had ASD and he is the exact opposite- all his drawers are labelled with the contents etc.

Yes yes to the being very talkative but also can be silent for hours.

Stimming- yes to tutting all the time.

There are so many things you don't notice are traits until someone points them out!

For anyone who's had the full assessment- is it true they ask your parents for info? I wouldn't want them to know I'm having an assessment. (They 'dont believe in' labels!!) They don't even have the insight to recognise what was odd about my childhood anyway (I think they are both autistic but completely unaware).

@felulageller Love the username! The specialist assessing me does ask for someone who knew you as a baby to answer some questions, but acknowledges this won't always be possible for various reasons, I'd expect it to be the same with others. I've only spoken to my mum and sister about me getting assessed, and I only involved my mum because my dad wouldn't know the answers. As yet he doesn't know about me getting assessed, but I'll tell him if I get a diagnosis. My mum is sceptical and thinks there's nothing wrong with me, but that can probably be put down to her not knowing much about it and just thinking (like I did for so long) that I'm just a bit quiet.

I'm doing so much reading about it, watching videos and listening to podcasts, the more of this I do the more I think, yes, this all makes sense. I'm actually really looking forward to my phone call next week and I actually feel like I'll be disappointed if I don't get a diagnosis, because then I won't have any answers and I'll have no explanation for why I don't fit in other than being weird.

After my nephew was diagnosed with ASD, I found myself thinking 'well, I do that too.' I started reading about ASD, and finally went to my GP and asked if he could arrange an assessment. He did, and the rest is history. The diagnosis has not really changed me, but it does help me to understand that I process information a little differently.

I watched a programme about a specialist school for girls with autism.

Halfway through DH and I just looked at each other. We both knew Before that we had no idea girls could even be autistic and had the idea that boys with autism were either 1. Rainman or 2. heavily learning disabled.

Before this I had had serious depression and anxiety my whole life, multiple episodes of counselling including 4 years of therapy. Despite this I have a very senior job.

Teaching about for boys and girls used to be dreadful.

Because I've spent my whole life having other people describe me as "different".

Frustrates me if I mention being/not being normal and others titter and say "Ah well who's normal anyway?!" Most people. Most people are normal enough that they haven't been identified as abnormal by others, constantly, their whole lives. And if that's you, don't titter and make out you have any idea what it's like to be not-normal.

felullageller (love it) there was a form to complete along with my own one but I left it. My Mum died before my assessment. Much as I love my Dad, he worked long hours and I don’t know if he would recall much specifics about my childhood that would have been helpful. I was able to do mine without his input (he actually looked after DD for me while I was assessed).

Great thread OP. Check out Sarah Hendrix on YouTube. She talks about autism in women and is brilliant.
Personally I only realised last summer, age 43, and am still undiagnosed. I'd been reading up on the subject as we thought my DH was likely to be on the spectrum and at the same time one of my Facebook friends was sharing a lot about neurodiversity in women after having been diagnosed autistic and adhd 4 years earlier. It was through one of her shared videos that the penny finally dropped that that was me. I've since realised that all of my family are very likely autistic (especially my dad who I'm very similar to). Both of our children have strong autistic traits too although are quite different to each other. It's so exciting to finally understand why I've struggled with some things that other people seem to find easy, despite being bright, capable etc. I just wish I'd known years ago, partly for myself but mainly to be able to support my children better especially when they were younger (they're 18 and 16 now and not interested in getting diagnosed for the time being).

Autistic son. Sister told me I was autistic too and I was shocked, it had never occurred to me before. Masking is exhausting but it's a way of life. You know you have to think through interactions first. It's good to know but I don't use it as a prop. Pointless getting diagnosed... For me. Just helpful to realise I am completely literal and very gullible to what people say. You have to adjust to the 'i want to see you' sometimes being just a social nicety.

If you feel you don't "fit" with autism, I'd look at ADHD and SPD. I have both, recently diagnosed as an adult through Right to Choose. As others have said, there is quite a lot of overlap between symptoms. I would be quite interested to see your traits.

How do you get assessed as an adult? I see a lot of what is described here in my eldest child.

@BedknobsNoBroomsticks Look up the NICE guidelines & if the criteria are met, make an appt with the GP & be prepared to go through it rigorously, depending on the GP. Waiting times were a year or more on the NHS in a lot of areas pre-covid. Or you can pay upwards of £1K for private but this may not be recognised if you want to make any claims or adjustments, eg at college, workplace etc.

[quote HauntedDishcloth]@BedknobsNoBroomsticks Look up the NICE guidelines & if the criteria are met, make an appt with the GP & be prepared to go through it rigorously, depending on the GP. Waiting times were a year or more on the NHS in a lot of areas pre-covid. Or you can pay upwards of £1K for private but this may not be recognised if you want to make any claims or adjustments, eg at college, workplace etc.[/quote]
Thank you for this advice. I will look at the NICE guidelines. There's no way I could afford to go private.