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

Do you think it is a disorder or a difference? Do you struggle with self care? Do you have any communication difficulties?

i think the biggest difference is social interaction/communication. I don’t have any friends. I have people I know (neighbours/dance class/work) that I can pass the time of day with briefly. I don’t see the point in small talk and feel frustrated when people gossip/mean about things without me having the opportunity to deep dive on things and resolve them. The assessor explained this is because I’m comfortable with transactional communication - when I’m clear what my role is. I’m not good when I’m unsure of my role and if I don’t know what people are expecting of me. I’m also not good with knowing when I should speak in a conversation.

lots of words there - I hope I’ve answered your question

im sad to hear that you’ve also been negatively impacted. It hurts doesn’t it? That’s why I was so pleased to know there was post diagnostic support - I’m looking forward to finding the ‘real’ me

Hi OP, hope that getting the diagnosis turns out to be a really positive step for you. Can I be nosey and ask how old you are?

How long did it take from GP to ADOS?
Assuming you had ADOS or Disco or some such?
Whereabouts in the UK are you?
Have your family accepted your diagnosis?
What do you think of the term "neurospicy"?

What made you seek a diagnosis? (I posted about this last night!)

I’m much the same. Did your assessors also say you were vulnerable to bullying and abuse? Mine did because I have so little understanding of social cues, body language and facial expressions.

Me too! 👋🏽 Autism and ADHD.

Diagnosed a couple of years ago now!

Just chipping in to say I hate neurospicy with a passion 😂 I know it's meant to be reclaiming and validating but all it makes me think of is a brain curry - and also implies that people are neuromild or neuroplain!

Almost two years to the day, post late diagnosis here. I was 36. I remember how angry, bewildered and relieved I was back then.

Hello fellow Autistic person! I was only diagnosed yesterday, however, work are trying to become more neuroinclusive so today I’ve joined an internal autism group and everyone’s been very welcoming and supportive.

the post diagnostic support from the Problem Shared provider includes 4 weeks of regular group calls of adults also recently diagnosed.

i haven’t told my manager yet, not because I don’t think he will be supportive, more that my career has been negatively impacted before when I’ve been my authentic self, and I don’t want to risk any more impact. I do want to tell people I’ve been diagnosed because I feel it ‘explains’ me but I know from bitter experience that sharing something can be used against you.

all in all, I feel cautiously excited that I might possibly ‘find my tribe’? I will share any external sources of support that I find

I totally get this. I function very well at work because it’s an organisation I set up, so it works how I want work to be. And I notice that a lot of my volunteers (we’re a small charity) seem on the face of it to be ND. In previous employed roles I just didn’t fit.

But:
I cope badly outside of work, and
An opportunity has come up to take a next step, career-wise, and I so wish I had some guidance about whether or not to disclose. I feel like I have so much to offer but I know from bitter experience that I may not fit into particular boxes.

I honestly can’t think of a time when I’ve felt like I’ve clicked with someone, however that is probably because I’m so anxious socially that I haven’t connected with new for years on anything other than in a professional or acquaintance basis. However, now I know a bit more about why I’m like this, and feeling more confident in being clear what I am and am not comfortable with, I do hope to find my tribe and hope to experience that feeling

I’m so happy for you that you feel good for the validation. I am also going on to be assessed for ADHD, I forgot to ask about the timeframe. I believe that a ADHD diagnosis may mean that medication may be offered?

do you know of anyone who has been diagnosed and is medicated?

Was your development different to the norm as a child? I mean things like did you learn to talk later?

Who did you get your assessment with, and what did it involve?

Who will you tell about your diagnosis? Do you think it will change your relationship with them?

I have been diagnosed with autism this year at age 59. I have told my husband and close friends but not my children. I kind of wish I hadn’t told my friends althoug not sure why I feel this. Also it annoys me when my husband points out something I’ve done that annoys him and blames the fact I’m now labelled autistic. Maybe I just did something annoying?

It was a mixture of all 3 of those reasons.

I really hope that now I have an explainer for how I am in terms of a diagnosis that I can build on it to create a personal and professional life where I feel more natural and comfortable every day. The best outcome I could have would be to find ‘my tribe’ because I have never had a tribe.

i don’t think anyone in my family is autistic. I am very different to anyone in my family in terms of how I am. However, so lucky that my Mum and Dad loved me even if they didn’t get me. After initial battle of wills over food that I hated the smell, texture and taste of and being unable to hold a conversation if the telly was on as well, of only liking a certain spoon with a medium length handle not a long handle, they acc

Congratulations on your diagnosis. Be aware that after the initial period of elation, there is often a slump which can last for around 6 months, sometimes more. This is normal. Everyone I know who was diagnosed as an adult experienced this to a greater or lesser extent, including me.

I’m expecting an initial summary of the diagnosis tomorrow, I will share the wording they use. I feel myself that it is a difference.

i don’t struggle with self care, in fact, very routined around it. I don’t smoke or drink or take recreational drugs.

communication differences are, i think, the biggest differentiator I have. I find small talk pointless, I don’t like it when people gossip or moan without the chance to deep dive into the root cause and resolve it. I really really struggle with people saying the same thing repeatedly in different ways, I don’t like too much talk with no action. I am very direct and prefer it when people say what they actually mean to me. I don’t get subtlety. I hate waffle. My worst form of communication is professional written communication, thank goodness for ChatGPT! That’s made a huge difference because I put in my direct blunt message and tell it to reword it - helps so much!

Thank you for the positive vibes - I hope so too!

of course you can, I did say ask me anything! I’m 51

It’s taken 3 months from GP referral to diagnosis.

I’m on the south coast.

I haven’t told my family yet, received my diagnosis yesterday.

i haven’t heard of neurospicy until I read your post!

I was in my late teens when I really realised that there was something ‘different’ about me. No-one sought me out to socialise with. That triggered many years of self discovery trying to find out if there was a reason (lots of personality tests and exploring various possible answers e.g depression, anxiety, personality disorder). Over the course of my career, I’ve received very negative words to describe me. The main trigger was when work introduced an initiative last year to make the workplace more neuroinclusive. The training I attended rang a few bells with me and so I wanted to get an assessment to explore if this was something that would explain me.

Yes!!! In fact, in the collateral assessment when we were exploring social relationships, I started crying when I realised what people had done to me over the years. I was abused, emotionally and financially and suffered bullying until early teens when I just withdrew from everything social.

i believe the best in people and have suffered because I couldn’t tell otherwise until I’d been hurt.

Waves hello back!