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I’m autistic AMA
146

EbbyEbs · 16/09/2022 23:02

Diagnosed at 39. AMA

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jewishmum · 17/09/2022 06:43

I used to want friends because its what everyone else does.
When I reached 30 I decided I was no longer going to long after making friendships.
I enjoy having the evenings to myself by googling things that interest me, studying or baking.
I see friends as a distraction from my free time and feel like a weight has been lifted now that I don't feel I need to make any.
Do you feel similar?

(Diagnosed age 30)

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Belindamccartney · 17/09/2022 06:51

Do you struggle with certain noises?

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Vitamm · 17/09/2022 06:54

What led you to seek the diagnosis?
What were you like as a child/ in younger years?

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EbbyEbs · 17/09/2022 06:55

jewishmum · 17/09/2022 06:43

I used to want friends because its what everyone else does.
When I reached 30 I decided I was no longer going to long after making friendships.
I enjoy having the evenings to myself by googling things that interest me, studying or baking.
I see friends as a distraction from my free time and feel like a weight has been lifted now that I don't feel I need to make any.
Do you feel similar?

(Diagnosed age 30)

Yes! I feel exactly the same.

I tried desperately to make friends in primary school but I was largely hated by everyone and could never understand why. Even the teachers hated me - one (male) teacher even took me aside and said “you’re a horrible little thing aren’t you?”

In secondary school I managed to make a couple of short lived friendships but by the time I was 16 I was alone and disliked again.

All through my adult years I tried to make friends and went out of my way to do “social” things that I didn’t want to do but thought I had to as that’s how you keep friends - it was exhausting.

I finally got diagnosed at 39 and it was instant relief and validation. I stopped agreeing to social events, admitted to myself that I didn’t even want friends and I allowed myself to be truly myself. Yeah people think I’m weird but I’m ok with that now, I’m not out to impress anyone, it doesn’t matter what they think of me. I’m at peace with myself now. Whilst everyone is out meeting with friends and drinking on a Saturday night etc I’m laid on the sofa under a blanket watching history documentaries and I couldn’t be happier.

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EbbyEbs · 17/09/2022 06:57

Belindamccartney · 17/09/2022 06:51

Do you struggle with certain noises?

Yes, I struggle with high pitched noises such as screaming or little dogs yapping and I struggle with repetitive music (Jazz music actually makes me angry).

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imnotthatkindofmum · 17/09/2022 06:59

Just checking are you female? I have a reason for this, I'm beginning to suspect my dd is autistic for various reasons and I'm aware it can present differently in girls (I'm a teacher and have 2 diagnosed autistic nephews so I have some experience of differences on the spectrum). It's post covid, however, and return to school at the age of 14 that her behaviours have really "exploded" forth so really I just want to know if there's any event in your life that had a similar effect where you were masking and coping and suddenly you weren't?

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imnotthatkindofmum · 17/09/2022 07:01

Ps I think jazz music makes a lot of people angry but not for the sane reasons as you. My dd reports actual physical pain at loud noises, she has to be top floor of our 2 storey house while my other dd plays trumpet on the ground floor.

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EbbyEbs · 17/09/2022 07:04

Vitamm · 17/09/2022 06:54

What led you to seek the diagnosis?
What were you like as a child/ in younger years?

As a child I was “odd” - in that I was just different from all the other kids. It was subtle as I learnt to mask young but my interests gave it away. I was obsessed with Ninja Turtles and Dogtanian. My special interest was dogs though and I had a dog book in which I would read every single night, memorised every breed in the kennel club and tested myself on it every night to make sure I never forgot any. I couldn’t make friends, I was really disliked but had no idea why.

I went for diagnosis when I was 37 - after I had a mental health breakdown. I’d qualified from university and got my first post grad job - was bullied by a senior member of staff … left and got a new job in the same field and was disliked there too. I’d just had enough. Ended up on quetiapine and the psychiatrist asked if I’d ever been assessed for autism. It was a 2.5 year old wait for assessment

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EbbyEbs · 17/09/2022 07:10

imnotthatkindofmum · 17/09/2022 06:59

Just checking are you female? I have a reason for this, I'm beginning to suspect my dd is autistic for various reasons and I'm aware it can present differently in girls (I'm a teacher and have 2 diagnosed autistic nephews so I have some experience of differences on the spectrum). It's post covid, however, and return to school at the age of 14 that her behaviours have really "exploded" forth so really I just want to know if there's any event in your life that had a similar effect where you were masking and coping and suddenly you weren't?

Yes I’m female and can mask very well when I want to. Nobody at work knows I’m autistic but I don’t get involved with colleagues so they don’t know me well at all. I can act totally neurotypical at work (well, almost but it does come out now and again!) but as soon as I get home I take my scratchy uniform off, get into my pyjamas, eat my Shreddies under my blanket and watch history or dog documentaries or research random topics on the internet.
I went off the rails as a teenager, started doing drugs and drinking - ran away from home at 16. I’ve never coped well … until I got my diagnosis and then it was a big middle finger up to the world and I was finally able to truly be myself and stop caring about being weird. I now genuinely do not care what people think of me.

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EbbyEbs · 17/09/2022 07:12

imnotthatkindofmum · 17/09/2022 07:01

Ps I think jazz music makes a lot of people angry but not for the sane reasons as you. My dd reports actual physical pain at loud noises, she has to be top floor of our 2 storey house while my other dd plays trumpet on the ground floor.

I don’t think I’d be able to be in the same house in all honesty, that would drive me insane.
I love listening to people playing the piano as long as they play it well 😂 people practicing an instrument badly makes me want to rip my own head off

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coastergirl · 17/09/2022 07:20

What sort of assessment did you have? I was assessed in 2015 but using the exact same tools they use to assess young children. They said I had traits and difficulties but didn't meet the criteria for diagnosis. I could have written your posts myself though, I'm so similar. My 7yo son is also autistic. I'd really like a proper assessment by someone who specialises in autism in women, but I've no idea how to go about it.

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EbbyEbs · 17/09/2022 07:24

coastergirl · 17/09/2022 07:20

What sort of assessment did you have? I was assessed in 2015 but using the exact same tools they use to assess young children. They said I had traits and difficulties but didn't meet the criteria for diagnosis. I could have written your posts myself though, I'm so similar. My 7yo son is also autistic. I'd really like a proper assessment by someone who specialises in autism in women, but I've no idea how to go about it.

To be honest I can’t remember what tool they used but I’ll dig the diagnosis letter out later and check for you.

The woman assessing me later told me that when we first started the assessment she thought to herself “no way, this woman is not autistic” … it was only when she started asking questions that I was uncomfortable with and my body language changed and I kept trying to steer the conversation back to dogs 😂 I was even masking during my assessment until she managed to knock my mask off (and watch me squirm!)

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BruisedSkies · 17/09/2022 07:35

I’ve always wanted to know, when autistic people say ‘mask’ what exactly is it you’re masking? Can you describe a situation where you mask? What would you like to do and what do you do instead?

Also, what do you think the difference is between autism and being very sensitive? My child is extremely sensitive to noise, to the point of fear, doesn’t like certain textures, feels of clothes etc. however she has no social difficulties, is popular, loves playing with friends etc so I don’t believe she is autistic. What is the link there?

I can understand not wanting friends because you’ve been bullied but would you want friends if you weren’t bullied?

Finally, I’m so sorry for your shit experience as a child and older. Sounds horrible and so upsetting to hear an adult teacher said that to you.

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forlornlorna1 · 17/09/2022 07:45

What's your relationship like with your parents?

I have a teenage dd who was diagnosed ASD aged 8. I often wonder what our relationship will be like when she's an adult. If she will always want the security and comfort of being home or if she'll be able to live an independent life. I try not to think too far ahead. It's strange having a close emotional bond with my older child but my dd keeps me at arms length (literally). When she no longer needs something from someone she simply cuts them off. I suppose that I'm worried that she could do that to me one day. I don't know I am waffling (I'm adhd lol)

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felulageller · 17/09/2022 07:52

How do you tell other people and how do they react?

I've found people either don't know what to say or make inappropriate comments about 'labels'.

Do you have DC's and how do you cope with parenting?

Have you found autistic support groups online or IRL?

Do you have any physical health problems. I have an autoimmune condition and I'm finding lots of ASD women are the same.

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EbbyEbs · 17/09/2022 07:54

BruisedSkies · 17/09/2022 07:35

I’ve always wanted to know, when autistic people say ‘mask’ what exactly is it you’re masking? Can you describe a situation where you mask? What would you like to do and what do you do instead?

Also, what do you think the difference is between autism and being very sensitive? My child is extremely sensitive to noise, to the point of fear, doesn’t like certain textures, feels of clothes etc. however she has no social difficulties, is popular, loves playing with friends etc so I don’t believe she is autistic. What is the link there?

I can understand not wanting friends because you’ve been bullied but would you want friends if you weren’t bullied?

Finally, I’m so sorry for your shit experience as a child and older. Sounds horrible and so upsetting to hear an adult teacher said that to you.

It’s difficult to explain but basically masking means you’re pretending to be someone you’re not. It’s a persona you adopt to make your character more acceptable to social norms.

An example of masking - going out for lunch with 2 friends. They want to sit talking about breast feeding, hair and beauty products, work etc … I want to start a discussion about how Chillingham Castle was used to hold and torture prisoners during the Anglo-Scottish wars but that wouldn’t be “normal” so I mask and join in with the stuff they’re talking about even though I have zero interest in it - because otherwise I expose myself as having weird interests.

I suppose the difference between autism and just being sensitive would be the amount of traits a person has. So a person might be good at socialising (some autistic people are) but they might be working very hard at that, they might be faking emotions (I’ve done that myself, as a child I pretended to be upset about a boy breaking his arm because everyone else was, I honestly couldn’t have cared less but nobody would have picked that up at the time). The thought process is different.

I do have a 3 friends now (2 in one group and one in another) and I like them but it’s still a chore to see them. I do it because I genuinely like them but I wouldn’t be massively upset if I never saw them again (as long as they hadn’t come to any harm)

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Belindamccartney · 17/09/2022 07:57

I read once on mumsnet that being autistic is "like being the only sober person at a party" all the time.
Does this ring true with you?

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EbbyEbs · 17/09/2022 07:59

forlornlorna1 · 17/09/2022 07:45

What's your relationship like with your parents?

I have a teenage dd who was diagnosed ASD aged 8. I often wonder what our relationship will be like when she's an adult. If she will always want the security and comfort of being home or if she'll be able to live an independent life. I try not to think too far ahead. It's strange having a close emotional bond with my older child but my dd keeps me at arms length (literally). When she no longer needs something from someone she simply cuts them off. I suppose that I'm worried that she could do that to me one day. I don't know I am waffling (I'm adhd lol)

My relationship with my mother was always strained (she appears to be autistic too but has never been diagnosed). She’s very focussed on herself and her own needs. I didn’t have the best of childhoods if I’m honest. My dad died when I was young.

I can be similar to your DD in that I do cut people off unless they make an effort to keep me in their life. I don’t do it out of spite or badness, I’m just not that interested in keeping in touch with people and unless they keep on at me to keep in touch, I won’t.

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EbbyEbs · 17/09/2022 08:04

felulageller · 17/09/2022 07:52

How do you tell other people and how do they react?

I've found people either don't know what to say or make inappropriate comments about 'labels'.

Do you have DC's and how do you cope with parenting?

Have you found autistic support groups online or IRL?

Do you have any physical health problems. I have an autoimmune condition and I'm finding lots of ASD women are the same.

I don’t tend to tell people unless I have to and they’re often shocked or simply don’t believe me. There is a lot of misinformation about autism and a lot of people still think “Rainman” so to see someone acting fairly normal saying they’re autistic comes as a bit of a shock to some.

I do have children and I found parenting difficult as I need “me” space above all else. I do love them both though and I wish I could be a better parent.

Other health problems - Anaemia, Hypermobility and IBS (and a terrible diet!)

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EbbyEbs · 17/09/2022 08:05

Belindamccartney · 17/09/2022 07:57

I read once on mumsnet that being autistic is "like being the only sober person at a party" all the time.
Does this ring true with you?

Yes! I’ve never heard that before but it rings true. To me, it’s everyone else acting weird and I’m the only one being normal 😂

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BruisedSkies · 17/09/2022 08:16

EbbyEbs · 17/09/2022 07:54

It’s difficult to explain but basically masking means you’re pretending to be someone you’re not. It’s a persona you adopt to make your character more acceptable to social norms.

An example of masking - going out for lunch with 2 friends. They want to sit talking about breast feeding, hair and beauty products, work etc … I want to start a discussion about how Chillingham Castle was used to hold and torture prisoners during the Anglo-Scottish wars but that wouldn’t be “normal” so I mask and join in with the stuff they’re talking about even though I have zero interest in it - because otherwise I expose myself as having weird interests.

I suppose the difference between autism and just being sensitive would be the amount of traits a person has. So a person might be good at socialising (some autistic people are) but they might be working very hard at that, they might be faking emotions (I’ve done that myself, as a child I pretended to be upset about a boy breaking his arm because everyone else was, I honestly couldn’t have cared less but nobody would have picked that up at the time). The thought process is different.

I do have a 3 friends now (2 in one group and one in another) and I like them but it’s still a chore to see them. I do it because I genuinely like them but I wouldn’t be massively upset if I never saw them again (as long as they hadn’t come to any harm)

Thanks for giving such a concrete example of masking! Must be really annoying/boring. Like making small talk all day or something.

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countdowntonap · 17/09/2022 08:25

Must be really annoying/boring. Like making small talk all day or something. It really is! My DH chatters away with me on my interests (e.g. going out for lunch but spending the time looking up the etymology of words) but when I have to socialise with family or co-workers I couldn’t be less interested in what they have to say. My ILs repeat the same boring family anecdotes at every outing and if I try to raise a topic of interest (IMO) it gets shut down immediately. Yawn.

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Sixteenpastten · 17/09/2022 08:36

My DD was diagnosed recently, she’s 16. She is finding college exhausting. I’m telling her to cut down and give herself more time, she’s saying she has to go and she has to do what everyone else is doing. She says she is not going to use autism
as an excuse.
she then goes to college, masks all day then comes home and tortured me over how hard it was and how tired she is etc. She’s bad tempered and tearful.
Should I encourage her to be pushing herself or giving herself a break?

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LadyGardenersQuestionTime · 17/09/2022 08:50

What do you get out of Mumsnet? Isn’t the chatter interminable?

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OrangeFlowersAreLovely · 17/09/2022 08:52

Do you ever want a relationship / marriage? Do you think you are capable of falling in love? Have you ever loved anyone romantically or non romantically? Family member etc?

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