I’ve just received a diagnosis of autism - AMA

[EatTheBastard]

Thought I’d do an AMA as 1) it will help me process the diagnosis and 2) some of the answers may help others

as you know, it’s a protected characteristic under the Equality Act 2010. However, as we’ve been sharing in some other posts on this thread, we know that the world of work isn’t ideal.

forgive me but I want to help you. Have you asked at the new opportunity organisation what their diversity, equity and inclusion policy is? That could give you a good insight.

if there’s anything I can do to help/support/enable you, lease do me. Am an excellent coach/problem solver

I have been diagnosed as an adult and, for me, the best thing was discovering that all of the rejection and other things like that, wasn't my fault.

Finding out that It's not because I'm a horrid person that I found making friendships difficult, it's because I'm different.

I used to look at the other Mum's on the school run and wonder why they were all friendly and chatty with each other but I was snubbed. They'd have social nights and I'd not be invited. I couldn't understand it as I always try to be nice, say hello, ask them about themselves etc. Now, I suspect they could just tell I was different plus I think my resting face is blank so not so welcoming.

Now, I feel so much better about myself and I understand myself better. I forgive myself for the difficulties I have.

As far as my Dad could remember (hard as it was over 45 years ago and he wasn’t my primary caregiver), I developed normally and hit all expected milestones. However, I was very gullible and very literal. When I was about 4 or 5, my Mum had been baking and left the biscuits to cool and told me not to eat a single biscuit. She came back to find I’d taken a bite out of each one. My Dad remembers me being very upset at being told off when I had done what I was asked. My sensory issues were also evident from very young, I wouldn’t have my nails cut and hated my hair being combed, it was kept so short that I was mistaken for a boy until puberty. I wouldn’t eat eggs and a big list of other things and wouldn’t drink milk. I couldn’t bear people talking to me if the tv was on, I was very very quiet.

My assessment was with a provider called Problem Shared. They provide services to my workplace.

after I had the referral from my GP, I had an initial hour long virtual conversation - we talked about why I was seeking an assessment and then it was a general chat. He recommended prioritising the autism assessment. I then had to complete pre-assessment forms and my Dad completed one as well.

i then had a collateral interview which lasted for 3 hours, this explored my childhood and adulthood and challenges I felt I had. Then there was a 30 min break and then the autism assessment started. That lasted 3 hours and consisted of conversation, being asked questions and doing some tests. The collateral assessor and autism assessor then met to compare notes and observations of me against the criteria. I then had a session a few hours later when they gave me their findings.

I’ve told Mumsnet😉. The only people I’ve told in real life are people at work in a neurodiverse group.

I will probably disclose it to my manager if I can ascertain that it won’t have any negative impacts.

I won’t tell anyone in the family, not that I don’t think they should know but I’m not sure what difference it will make. I know they love me and I know they are aware of my ‘quirks’ and are well used to them, so I don’t see that them hearing I am autistic will result in any meaningful difference. I don’t have any friends to tell.

please tell me more, if you’d like to, why you kind of wish you hadn’t told your friends. I’m curious.

I don’t blame you for feeling annoyed with your husband! I think that would annoy me too! Sometimes, I think people just reach for the laziest, obvious answer without giving any though as to how the receiver will feel.

Thank you so much for sharing that, your experience mirrored my own so closely, the rejection and not being included have been so hard to bear over my life and I’m so sorry that you had to experience that hurt as well.

there is definitely something about me that people don’t like/don’t take to/find it easy to be nasty to. My default expression is blank and unsmiling as well .

m so happy to hear that you are feeling better about yourself, I hope to be in that place sooner rather than later.

Yes once you have an ADHD diagnosis you can be medicated.
I know a few people who do take ADHD medication some find it really life-changing others are not happy with the side effects.
I'm on the fence about medication, if I was sure that I wanted to take it I might look into being assessed privately to speed the process up.
My GP referred me for my autism assessment about a year ago and I had my assessment appointment about two months ago and then the diagnosis was last week.
They did tell me about the post diagnosis support they have. Which is a support group with other recently diagnosed autistic people for a year lost diagnosis and a 7 part workshop to learn strategies to help navigate life and a session with an occupational therapists to come up with reasonable adjustments in the workplace and produce a statement that I can give to me workplace describing the adjustments I need.
I don't think I will share the diagnosis with my manager, he seems a bit old fashioned and not very accepting.
It's nice having a name for why I struggle with day to day life so much instead of feeling like someone who is failing life.
I'm quite young, still in my twenties and find friendships and relationships hard to maintain but what's really helped is taking the pressure off myself that I don't need to have many friends and I actually like spending time with myself. I have some good friends but I don't spend loads of time with them and it works well for me.

One more thing, if you use reddit, I really like the Autism in women subreddit. It's got a very nice vibe with people trying to be genuinely helpful in giving advice or just discussing things around autism. I suspect it skews quite young but I've seen people of all ages on there.
Some other neurodivergent subreddits are not that nice.

That's also so much my experience of friendships, @EatTheBastard @OhIdoliketobebesidetheseaside32. I have an assessment with PsychiatryUK soon, but I don't think it's so thorough and I don't have anyone to do the family bit.

I actually want them to find that I am autistic because it will explain so much socially that I can't find any other answers for.

I made the same mistake. Naively thinking that now I’d been diagnosed, I’d somehow receive more grace for my social and communication differences. Unfortunately that hasn’t been the case, the only friend I opened up to, quickly used my diagnosis as a means to blame me for issues that they’d caused. Be cautious about who you disclose your diagnosis to!

My Dad was too old to do the family bit so I just detailed things that he'd told me about n the past.

How frustrating I was as a baby, how I was hard work as a toddler, getting kicked out of preschool, based on this experience, they decided not to send me to nursery school, how I screamed every day for a term at Reception class drop off so badly, that they had to call for my siblings to sit with me, him sending me on simple errands and me forgetting what he'd asked me to do etc

Yes! I couldn’t agree with you more. Being snubbed by school mums is so triggering, what’s worse is my child not getting invites because I’m not pally with all the other mums. I’ve made the mistake of taking people at face value, only to later realise that person doesn’t actually like me. And is only using me to taxi their child around, whilst talking badly about me behind my back etc. I cannot wait for my youngest to finish primary school!

Thank you for replying. I am wary of not hijacking your thread, but I'm grateful for the offer and may well DM you.

It is as you say, the gap between the theory (Equality Act) and the daily reality on the ground. I had an event a while ago where I disclosed - I knew the organisers expected me to be "bubbly" (urgh) and into networking etc, because that's the version of me they see when they visit me at my office, but going somewhere unfamiliar and loud in the evening in uncomfortable clothes without a clear understanding of what would happen when, plays to a whole bunch of my weaknesses. And I wrote to one organiser to say just that. They were a bit over-accommodating but they certainly weren't dismissive, which I was happy with. And I don't think it's harmed our working relationship since.

Anyway - will DM you and stop hijacking!

Do you think it is possible to appear autistic because you were raised by an autistic parent, but not be autistic? My mum definitely is and I often feel I understand both worlds although increasingly feel it was an assumption I understood the NT world and I actually don't. But I wonder if that is because I was never explained or shown. But then that's an autistic experience isn't it, to feel everyone else got an explanation and you didn't. But then I look at NT parents and I see they are often much more engaged in explaining and talking to their kids. My mum is undx autistic and probable ADHD and my dad was away abroad a lot.

@SaltyChocolate I doubt it. The heritability of autism spectrum disorders runs at about around 80-90%. It’s highly probable that you’re on the spectrum. The issue with identifying autism in families lies in that no two autistic people present in the same way, even between siblings. And equally when it comes to diagnosing women, we are still decades behind in understanding how women and girls present.

It makes me feel sad and so angry in equal measure to hear that others have experienced these terrible things

You’re not hijacking!! I didn’t mean it in that way! My written communication is awful.

please post away because if you’re happy to share as I think lots of people benefit from hearing challenges and also seeing the different suggestions others make

It’s a really good question, I don’t feel I can even give an opinion on that because I just don’t know enough. We need a qualified assessor to answer that. I will ask that question in my post diagnostic sessions and will report back. I’m on the waiting list so don’t have a timeframe

@SaltyChocolate when I was answering your question yesterday I oromised to share the wording from the assessors. They’ve sent me a summary today while they are compiling the full report which will take a few weeks. The purpose of this summary is so I can use it at work if I need it.

‘We use the term autism to refer to autistic neurology as we understand autism is an inherent part of an individual’s identity; informing a person’s development, cognition, experience and understanding of the world in ways that are pervasive and inseparable from the person’s overall being.

Autism is a neurodevelopmental difference (meaning people are born autistic and remain so their whole lives ) and has a pervasive influence on development on multiple levels through to the lifespan.

Oh wow 80-90% is a lot. I had absolutely no idea. Its so interesting as when I was young I thought my mum had borderline personality disorder. Now I think she is autistic and was going through perimenopause! I think a lot of people were misdiagnosed.

How do you think your colleagues feel about working with you?
Do you have any subordinates? What do they say?

Are you socially anxious - moreso arounds groups of people as opposed to one on one friends?

@SpaceRaiders I’ve probably misunderstood but what do you mean by the heritability is 80-90%?

I know lots of families where the parents are NT and have multiple children and only one has ASD.

DH’s grandfather was autistic (we assume) and he had 6 kids, 3 NT and 3ND. One of the NT ones has a child with ASD so I guess was a “carrier”, but there are no other ND kids in that generation (DH’s) out of a total of 10 grandchildren, including the kids of 2 of the ND ones.

Good question! I’ve had much more negative words used to me than positive over the years. It varies from ‘she’s a pain in the arse’ to ‘she’s bloody amazing, she get things done in 5 hours what it’s taken 5 people 5 months and they never got it finished’. It really depends on who I’m working with and what their mindset is.

hope I’ve answered your question.

Oh my goodness yes. going into a social group where I feel I’m expected to engage is very uncomfortable. Meeting people in a group is for me like going into a sporting competition and trying to win when you don’t know the rules!

however, I do like being part of a group where everyone is chatting and I can just listen and observe. I like to see people happy and enjoying themselves. The nightmare scenario would be where someone turns to me and says ‘you’re quiet, what’s wrong/the matter’ because that focuses negative attention on me.

im ok with 1:1 at a superficial level - like a 5 min catch up. Any longer than that and I have to play a role - like problem solver, coach, shoulder to cry on. I focus on asking the person questions because I don’t want people to ask me anything other than superficial level. And that’s because I don’t have any friends so i don’t want people to know that because I know people find that weird/feel sorry for me.

long answer - hope I’ve answered your question!