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Original poster

Could I be autistic?

34 replies

fayepetal · 10/05/2023 12:55

Sorry, this may be long.

A bit of background - I am mid-thirties, female and have 1 dd (10) who is currently on the waiting list to be assessed for autism, which is what has triggered all of this for me. I am finding life increasingly more difficult, and have researched a LOT about the traits my dd has which has caused a bit of a lightbulb moment for me. DD is typical (suspected) autistic girl - flown under the radar for a long time and presents as NT to most people, but we've put together lots of pieces of the puzzle and her teacher has agreed she is likely autistic and is helping with referral.

I am unsure why I am finding it so difficult right now, maybe extra stress as both DH and I are working full-time and trying to run a business on top of this, but I think the realisation that I may be autistic has made me notice things a bit more? I am having a particularly bad day - woke up this morning absolutely exhausted and completely shut down. Found it hard to get words out when DH was speaking to me earlier. I don't feel depressed as such, just completely drained.

I'll do a list below of things I have noted down, but could anyone advise if they think its worth approaching my GP about it? I know about the Right to Choose pathway through all the research I've done, so if I decide to, I think that will be the route I'd go down.

Sensory

  • Very sensitive to loud noises/noise - I can't take my DD to the school disco, for example, as the noise is too much for me and I find it really overwhelming
  • Find it hard to hear people when they talk as can’t filter out other sound (no problem with hearing as I've had it checked a few times over the years)
  • Do not like being touched - known as the 'non hugger' in life, and find touching anyone just in an everyday sense very awkward
  • Sensitive to how things feel - get frustrated at feeling of clothes etc.
  • Can often feel sick at the thought of something - an example of this is I saw a news story recently about something gross food-wise and it made me feel horrendous for a few days, like my whole body was cringing constantly... which sounds ridiculous and I understand how irrational it is!

Social

  • Do not enjoy social situations and actively avoid them
  • Find it hard to make small talk/keep conversation going
  • I have practiced ‘scripts’ for conversation - certain phrases I will say for small-talk as it doesn't come naturally to me at all
  • I can 'switch on' my (fake) personality and can actually come across as very normal and bubbly if I need to, but it's completely pretend
  • Mirror peoples body language in conversation
  • Spend all conversations thinking about how much eye contact I should be giving / how I should hold myself to look relaxed / should I unfold my arms etc etc.
  • Spend a lot of time thinking about how I am perceived by others / replaying conversations I've had
  • I do have friends but I never have 'best friends' and always feel like I'm on the peripheral group throughout my life. Find it hard keeping in touch with people and I'm always a bit of a second thought to a lot of friends. I do not blame people for this, I think I just struggle for some reason and probably think I'm closer friends with people than I actually am?

Other stuff

  • Stimming - picking fingers, rubbing finger nails and moving fingers in patterns - worse when stressed
  • Facial ticks - this used to be worse when I was a teenager and I've not done it for a long time, but has come back a bit recently
  • Grinding teeth/clenching jaw
  • Need a lot of downtime/alone time to recharge
  • Find being social/talking to people/doing stuff exhausts me
  • Shut down when stressed
  • Brain fog - getting increasingly worse - cannot process what I am trying to say, very forgetful
  • Bad memory - I can only remember very small amounts from my childhood. Cannot remember anyones names from school/teachers names/family memories my siblings talk about
  • Find it hard to process what people are saying in conversation - easily confused and have to get people to repeat stuff a lot, even though I am fairy intelligent
  • Struggle with vestibular balance - couldn't swim or ride a bike until I was in secondary school (and still not great at it). Find a lot of things terrifying, like heights, struggle with stairs and escalators etc.
  • Bad with managing money
  • Binge eating - I think this may be a sensory seeking thing for me
  • Get obsessed with things and will research intensely then move onto the next thing and do it again

As a child/teenager I struggled a lot with anxiety and I thought I has OCD for a number of years, but after researching I realise this was a lot of pattern recognition and self-regulatory behaviour. I didn't have a bad childhood but my parents weren't the type to talk about anything more than surface level stuff (still the case now) so they never picked up on any of this. My Mum said recently that when I was a teenager I would never speak to anyone and came across as rude a lot of the time.

I got on ok at school - I was considered to be quite clever in primary school but didn't do great at secondary as my parents weren't interested in pushing me at all and I was left to my own devices. I wasn't part of the popular crowd but wasn't bullied either, just sort of coasted through unnoticed. I did have friends so didn't find things difficult in that respect until I got to about 18+.

I'm not entirely sure a diagnosis would do much, but it would answer a lot of questions for me and maybe help me to work out how to look after myself.

Sorry it was long - any advice appreciated!

OP posts:
bennybabushka · 10/05/2023 13:59

Bump Smile

Felucia · 10/05/2023 14:01

I'm autistic and you certainly sound it to me.

BettyBoopy · 10/05/2023 14:08

Yes I'd say you most probably are. Have you watched the recent Chris Pac-Man documentary? You may find this interesting.

Interested in this thread?

Then you might like threads about this subject:

10 year olds
BettyBoopy · 10/05/2023 14:08

Packham!!!

cocksstrideintheevening · 10/05/2023 14:10

You sound a lot like me and I am now waiting for assessment. the Chris Packham and Christine McGuiness documentaries were pretty insightful for me.

Looking back to when I was a kid it explains a lot.

Bimbom · 10/05/2023 14:13

You sound very much like me. My DD12 got her diagnosis last year and I'm pretty sure I'm autistic too. Can't decide whether to pursue a dx or not for myself though.

Original poster
fayepetal · 10/05/2023 14:18

Thanks everyone. The documentary is on my radar but I've not gotten around to watching it yet.

I know I need to approach the GP about it but this is a bit of an obstacle for me as I find it hard to get myself to do that sort of stuff. I am feeling worse and worse as time goes on though and need some answers so I can work out how to take care of myself.

OP posts:
Boxbedbank · 10/05/2023 14:29

You sound like me.
I have two dc diagnosed with asd. When dc2 got diagnosed the paediatrician actually mentioned to me that I perhaps could look at a diagnosis for me.
I have put off for years now getting a diagnosis because I thought what's the point, will it help me, is it waisting nhs resources that could be better spent on others etc...
But last week I took the plunge and emailed the gp (thought it would be easier than ringing up), they messaged me back and I have a phone appointment next week (which because I've told them most details in an email doesn't feel so daunting).
The thing that tipped me over into making the appointment was actually my pip (which is for physical and mh issues) assessor refusing to acknowledge any issues I have that could be 'autistic traits' and down grading my award. It was the push I needed. I now have 3 years till the next assessment to sought a diagnosis out (if that's what it is) but unfortunately it has to be an nhs one to be acknowledged (according to the pip assessor).

Nat6999 · 10/05/2023 14:32

I am exactly like you & wasn't diagnosed until I was 53, like you I have a child with autism.

Original poster
fayepetal · 10/05/2023 14:36

Boxbedbank · 10/05/2023 14:29

You sound like me.
I have two dc diagnosed with asd. When dc2 got diagnosed the paediatrician actually mentioned to me that I perhaps could look at a diagnosis for me.
I have put off for years now getting a diagnosis because I thought what's the point, will it help me, is it waisting nhs resources that could be better spent on others etc...
But last week I took the plunge and emailed the gp (thought it would be easier than ringing up), they messaged me back and I have a phone appointment next week (which because I've told them most details in an email doesn't feel so daunting).
The thing that tipped me over into making the appointment was actually my pip (which is for physical and mh issues) assessor refusing to acknowledge any issues I have that could be 'autistic traits' and down grading my award. It was the push I needed. I now have 3 years till the next assessment to sought a diagnosis out (if that's what it is) but unfortunately it has to be an nhs one to be acknowledged (according to the pip assessor).

Sorry to hear of your issues with the PIP assessment!

Look into the NHS 'Right to Choose' service, if you haven't already. You can be referred to Psychiatry UK who are carrying out assessments on behalf of the NHS and the waiting time is around 6 months rather than years. It was less but I think a lot of people are using the service now so times are going up.

psychiatry-uk.com/right-to-choose-asd/

OP posts:
Original poster
fayepetal · 10/05/2023 14:39

Forgot to say, my GP don't seem to advertise an email address which is frustrating as I'd be way more comfortable emailing them Sad

OP posts:
FlamingoYellow · 10/05/2023 14:48

You sound a lot like me and I have Aspergers. I found it helpful having an explanation for why I act in a certain way or find some things harder than other people do. I felt a lot of shame pre-diagnosis about not being good enough and that's faded away now I understand myself better.

I also didn't realise that I can't filter out background noise when I'm having conversations until everyone started wearing masks during the pandemic and I suddenly couldn't understand what anyone was saying. I must have been lip reading for years without realising!

GreenDressy · 10/05/2023 14:51

I recognise a lot of your traits in myself, and I have an ADHD diagnosis. The doctor did say some of my "symptoms" indicated possible autism but she wasn't qualified to diagnose it herself.

Peachlollipop · 10/05/2023 14:53

I near enough could have written your post, OP. I’ve long had suspicions about me as well. I hope you get answers. What

Peachlollipop · 10/05/2023 14:53

Apologies for the random ‘what’ in my post above.

bunhead1979 · 10/05/2023 15:05

I've not read your full post, but I scrolled past the bullet pointed list and the phrase my autism assessor said to me (in the face of my long bulleted list) screamed out to me, which was that people who are not autistic do not write long lists about all the reasons they think they are autistic.

I found diagnoses useful, I'd had a serious breakdown. But now I have, over a few years, learned to handle myself better, be kinder to myself, listen to myself and advocate for myself when necessary. I no longer consider myself a massive fuck up and I wish I'd know this many years ago.

Good luck OP x

OhTinyBear · 10/05/2023 15:07

I am, and from what you describe I think you probably are as well.

Diagnosis as an adult is a comforting thing in that you finally have an explanation objectively given to you by an expert. It’s also discombobulating because it tips you from quietly uncomfortable oddball, who can often pretend to be otherwise, into confirmed uncomfortable oddball. (Sorry, I’m tired at the moment and can’t think of a better way to word that.) You are different, you haven’t spent your whole life feeling different for no reason, and somehow you have to make your peace with that - and on your own, because there is no post-diagnosis support in most areas.

And, although I try to avoid generalising, in my experience non-autistic people simply will not get it. No matter how carefully you try to explain. So if you do go down the assessment route, and if you do get given the diagnostic label, please be cautious and guarded about who you share that information with. People you thought were good and kind might begin treating you differently - worse - when you confide in them. Workplaces are unlikely to bother making any adjustments to policies and practices, although you might get some noise-cancelling headphones if you’re lucky. And for the love of whatever might be holy, do not read the frequent autism-bashing stuff on here, it’s incredibly distressing. (Although I suppose that stuff has helped me contextualise a lot of the workplace bullying I’ve been subjected to over the years. Still don’t recommend exposing yourself to it if you can avoid it, especially during your own assessment/diagnosis journey.)

Re approaching your GP: I can recommend drafting a script, or at the very least scribbling down some bullet points to discuss in an appointment. Your post is a good starting point tbh. And of course, most incidence of autism can be attributable to genetics - it runs in families. If your child is on the diagnostic pathway then there’s a high probability it’s come from somewhere. That’s relevant to a discussion with your GP. And while you are learning how to advocate for your child (the SEN boards here are useful if you’re not already on them), you’ll be learning some of the tools you need to advocate for yourself.

Good luck with everything.

Original poster
fayepetal · 10/05/2023 15:07

bunhead1979 · 10/05/2023 15:05

I've not read your full post, but I scrolled past the bullet pointed list and the phrase my autism assessor said to me (in the face of my long bulleted list) screamed out to me, which was that people who are not autistic do not write long lists about all the reasons they think they are autistic.

I found diagnoses useful, I'd had a serious breakdown. But now I have, over a few years, learned to handle myself better, be kinder to myself, listen to myself and advocate for myself when necessary. I no longer consider myself a massive fuck up and I wish I'd know this many years ago.

Good luck OP x

Thank you. That is so funny as I read someone say the exact same thing recently!! People who aren't autistic don't spend hours researching and worrying they are autistic! I am convinced the GP would just fob me off because I am an expert at appearing 'normal' as I've been doing it for so long.

Sorry to hear about your breakdown. I hope you are doing much better now.

OP posts:
dontlookbackyourenotgoingthatway · 10/05/2023 15:10

Watch the Vanish autism ad.

Seriously, a laundry product advert.

morekidsthanhands · 10/05/2023 15:11

I've recently had a very similar realisation myself after my child was referred for an autism assessment. Reading through your list we are very similar!
Sorry to ask a question in your thread but I just wondered for those that have pursued an autism diagnosis later in life- what have been the benefits if any for you? Have you been able to access any treatment or support?
I'm not sure what a diagnosis would do for me other than confirm my suspicions. My partner agrees that I am likely autistic but doesn't see the point in doing anything about it.

Original poster
fayepetal · 10/05/2023 15:13

OhTinyBear · 10/05/2023 15:07

I am, and from what you describe I think you probably are as well.

Diagnosis as an adult is a comforting thing in that you finally have an explanation objectively given to you by an expert. It’s also discombobulating because it tips you from quietly uncomfortable oddball, who can often pretend to be otherwise, into confirmed uncomfortable oddball. (Sorry, I’m tired at the moment and can’t think of a better way to word that.) You are different, you haven’t spent your whole life feeling different for no reason, and somehow you have to make your peace with that - and on your own, because there is no post-diagnosis support in most areas.

And, although I try to avoid generalising, in my experience non-autistic people simply will not get it. No matter how carefully you try to explain. So if you do go down the assessment route, and if you do get given the diagnostic label, please be cautious and guarded about who you share that information with. People you thought were good and kind might begin treating you differently - worse - when you confide in them. Workplaces are unlikely to bother making any adjustments to policies and practices, although you might get some noise-cancelling headphones if you’re lucky. And for the love of whatever might be holy, do not read the frequent autism-bashing stuff on here, it’s incredibly distressing. (Although I suppose that stuff has helped me contextualise a lot of the workplace bullying I’ve been subjected to over the years. Still don’t recommend exposing yourself to it if you can avoid it, especially during your own assessment/diagnosis journey.)

Re approaching your GP: I can recommend drafting a script, or at the very least scribbling down some bullet points to discuss in an appointment. Your post is a good starting point tbh. And of course, most incidence of autism can be attributable to genetics - it runs in families. If your child is on the diagnostic pathway then there’s a high probability it’s come from somewhere. That’s relevant to a discussion with your GP. And while you are learning how to advocate for your child (the SEN boards here are useful if you’re not already on them), you’ll be learning some of the tools you need to advocate for yourself.

Good luck with everything.

Great post, thank you for taking the time to write that.

It almost certainly comes from my Dad. He's always had some very odd behaviours and I'd not put 2 and 2 together until recently. My DH is also quite obviously on the spectrum but he's not interested in diagnosis, so DD had a nice double whammy to contend with!!

OP posts:
Boxbedbank · 10/05/2023 15:13

fayepetal · 10/05/2023 14:36

Sorry to hear of your issues with the PIP assessment!

Look into the NHS 'Right to Choose' service, if you haven't already. You can be referred to Psychiatry UK who are carrying out assessments on behalf of the NHS and the waiting time is around 6 months rather than years. It was less but I think a lot of people are using the service now so times are going up.

psychiatry-uk.com/right-to-choose-asd/

Show quote history

Thank you that's very useful I shall ask the gp next week.

Original poster
fayepetal · 10/05/2023 15:14

dontlookbackyourenotgoingthatway · 10/05/2023 15:10

Watch the Vanish autism ad.

Seriously, a laundry product advert.

Yes I've seen it! Very good. I showed it to my DD and she said it was very relatable.

OP posts:
bunhead1979 · 10/05/2023 15:20

morekidsthanhands · 10/05/2023 15:11

I've recently had a very similar realisation myself after my child was referred for an autism assessment. Reading through your list we are very similar!
Sorry to ask a question in your thread but I just wondered for those that have pursued an autism diagnosis later in life- what have been the benefits if any for you? Have you been able to access any treatment or support?
I'm not sure what a diagnosis would do for me other than confirm my suspicions. My partner agrees that I am likely autistic but doesn't see the point in doing anything about it.

It hasn't really helped me access anything. However I did do a Late Diagnosed group at a local centre and that was incredibly eye opening, sitting in a room of other newly diagnosed adults going WTF was very liberating.

Mainly it has been for my own validation. I have always been very contrary in peoples eyes but really I just struggled with "norms" and now I accept that, and can explain this to people.

On the outside I am "successful" -at work, have family, probably seem like I "have it all" but the cost has been a lot and I often wonder - especially at work- why I can't do better, I see other people sail through things I find very hard, or pull energy out for projects where I am using all mine just on basic functioning. So now I know why I give myself some slack, I could NEVER have achieved the same, I could never have done all these things. I wasn't a loser for dropping out of school, I was was misunderstood and unsupported, etc etc the list goes on.

I spent ages 25-35 constantly trying to FIX myself, so much counselling and coaching and self help books, why did I find normal things so hard, why was i so weak and lazy. I hate that I went through that. There was nothing to fix.

amusedbush · 10/05/2023 15:22

FlamingoYellow · 10/05/2023 14:48

You sound a lot like me and I have Aspergers. I found it helpful having an explanation for why I act in a certain way or find some things harder than other people do. I felt a lot of shame pre-diagnosis about not being good enough and that's faded away now I understand myself better.

I also didn't realise that I can't filter out background noise when I'm having conversations until everyone started wearing masks during the pandemic and I suddenly couldn't understand what anyone was saying. I must have been lip reading for years without realising!

I'm autistic and also realised during the pandemic that I must have been lip reading without realising! I have horrendous auditory processing and mishear people all the time, so masks made it infinitely worse. I've now noticed that, while I don't make eye contact while I'm speaking, I stare at the other person intently while they're speaking. I guess I'm unconsciously lip reading, then I look away when I'm replying.

Our brains are structured differently to those of neurotypical people; we have more synapses firing, so we physically can't filter external stimuli. Apparently neurotypical brains reduce their synapses by around 50% by adolescence but autistic brains only reduce by around 15%.

My brain processes all sounds with the same level of priority so I can't take in what someone is saying to me if someone else is whistling, or a baby is crying, or a phone is ringing.