Newly diagnosed, people dropping away

I know, she was pleased I shared my experiences with her so it was okay. I’m very lucky to have nice supportive parents.

I think there is quite a lot to be said for "quality" over "quantity" when it comes to being fortunate with friendships.

As Roy touched on; the potential encounter on sharing your news of "You don't look autistic!", or similar variations, can be worth a bit of thought.  It is all too tempting to retort with with the well-worn "Well you don't look ignorant, but there you go!".

This video does a sensitive job of introducing everyone to a wide array of Autistic adults (we are not "Barbie", or "Ken" etc. - there is not one stereotypical way to be an Autistic person and we don't arrive neatly packaged in a box labelled "Autistic"). 

The video was produced to try and introduce:

- examples of the diversity of Autistic adults people might meet,

- to help those going through the diagnosis process, or who have newly been diagnosed as Autistic adults: to understand more about Autism, and

- to help Autistic adults consider some other strategies for talking about themselves, of which a part is their individual Autism experience.

https://www.youtube.com/watch?v=cuHmStt7F3c

I feel a bit, well, sad / upset / disappointed - when someone in my workplace / community or social group / circle of family or friends tells me about their colleague, acquaintance, friend, or relative, (by way of only introduction information), by saying literally only: "she / he / they are Autistic". 

That is sometimes, really, all you get - every time they subsequently mention the person -"of course, you know, they are Autistic".  As though that lets them off the hook for bothering to find out more than "Autistic"?

At which point I hear (just in my head; my own thoughts / exasperated scream) ...of: "What ELSE are they?  They are unlikely to ONLY be Autistic!  What do they like, love, or hate?  What are their aspirations, ambitions, hopes and dreams?  What are they good at?  What constraints might they manage?  What adjustments would they welcome on a good day?  What support helps them cope best on a bad day?  Who is the character within and without?  What makes the person happy or sad?"

I don't put it like that to the person speaking about the Autistic person - and even better would be to hear the Autistic person's "owned" story, "first-hand" from them - whatever they choose to share - by their own communication means of choice. 

However, I will hope to learn, apart from being an Autistic person ...what ELSE makes "THEM", the vibrant INDIVIDUAL they likely might be?

Particularly grim; is if the person being referred to is actually a child or young person - I am confident they are not ONLY "a label". 

That really makes me feel cross - please don't let anyone give a label as an excuse, or the power, or the dismissal route - for adults to squash the character etc. out of our youngest neurodivergent people within society.  I believe that is one of the ways how unhealthy masking is reinforced.

I like how this video ends by reminding those of us newly diagnosed, (or diagnosed as Adults):

- everyone (Autistic, or not) has their own strengths / weaknesses,

- each person has their role to play and their contribution to share,

- things which don't stress Autistic people may be exactly what stresses a non-Autistic person (and vice versa),

- don't compare yourself with other people (Autistic, or non-Autistic).

Anyway, I found some value in the video - hoping some others may do so likewise.

Hi, sorry you are going through this, you’re not alone. I’m recently diagnosed and have found very similar reactions from family and  friends. I am very lucky that my partner is now accepting me as autistic, she is a nurse and seems to accept something better if it’s been formally done and written in black & white.

I don’t think I’ve had a positive comment from anyone else, it can be quite lonely, people think they know you, when you suddenly change, they don’t seem to understand it, it’s met with scepticism. I  feel if I had told someone I had been diagnosed with cancer, they would show at least compassion and not dispute the diagnosis.

I’ve explained that I’ve had all the tests and interviews for autism and I am formally diagnosed, why do people then dispute that diagnosis?

Other neurodivergent people seem to understand without question, I told a neurodivergent friend who I don’t see very often, I joked and softened the news with, “I know, I don’t look autistic.” He just replied with, “ I know, it’s all part of the mask.” I almost actually cried.

I’m learning who I want or need in my life, you will loose people along the way, you will also find your people.

And the friends who haven’t run for the hills are neurodivergent themselves and looking into diagnosis 

I was like you but as the floodgates start to open it was almost like a snowball effect and I can’t stop it, I’m unpeeling and even thinking about  leaving my husband after decades of invalidation, I keep stopping and questioning what the hell im doing but I think for the first time in my life I’m trusting my instincts. Instincts Ive buried since childhood. Oversharing sorry cant help it. I thought this morning that I would rather be alone in this world with my daugher and a couple of people who get me than be constantly put back in a box and I know that feeling very deeply of being told to get back in my box in different ways and actions.

Well done to your Mum!  That can't have been an easy experience.

I agree totally. I nearly didn’t use an informant at all! Obviously my partner was out of the question although her relaying all the things that annoy her about me would have been useful information. I used my mum as my informant, it was hard for me to approach this as I knew she might blame herself in some way for not recognising in my younger years and then there is the possibility she might recognise traits within herself that might trigger a journey for her, I didn’t want to highlight it for her sake. Anyway she did it and I was very proud of her and grateful. 

Take5 said:

I have not disclosed my diagnosis to my partner

That sounds a tough place in which to be - I do understand and really respect you having shared that life choice though.

If the Autism assessment / diagnosis process / evidence constraints for later adults - were to have been available to me and in practical terms been structured differently - I suspect I might well have preferred to opt for a similar route myself.

The current NHS / Right To Choose process and obsession / requirements around other relatives as "informants" really does not sufficiently respect the human rights, safeguarding and confidentiality of the adult (as an individual) being assessed (it really doesn't necessarily failsafe in all adult / elderly relative / life partner real World scenarios and considerations).

Hello Chloe1980

I am starting to find this as well. I am recently diagnosed. I had been that caught up on unmasking and trying to identify how and when I do it I have started to realise it’s happening naturally for me. This is quite scary as for a very long time I wasn’t aware I was even masking, this now makes me super conscious when I am masking. I have been told by close ones that I am very vacant and show no emotion, even my 10yr old son who is diagnosed autistic said he wants his dad back. That’s upsetting to hear as I pride myself on being a good parent. 
Sure I have friends but most are not real friends and I’m not exactly 100% sure of what the actual definition of a friend means. 
I have a lot of time alone as I work a lot of the time for myself, this gives me peace and keeps me relatively calm. 
I do have a good friend that supports me and I support him which I am very grateful for, we don’t go out or anything like that (so if that still counts as a friend then that’s great). 
friends that I have and known though my partner I have all but written off, they are very different from me and have disappointed me hugely in the past with some things that they have done wrong which has made me question their morals. It’s a shame but I can’t feel connected to individuals who selfish and don’t consider their own actions. I just don’t feel able to talk that much anymore and I certainly don’t share their interests and outlook. I have a holiday approaching and have to spend 10 days with them which is going to be tough.

My relationship is all but disappeared as I am not treated in a nice way, constantly being pushed around (not physically), told how I should look happier, constantly invalidated and generally suffer emotionally from a constant barrage of abuse. I have not disclosed my diagnosis to my partner for reasons that I won’t bore you with but she would not be supportive anyway and I even think revealing would work against me. 

Think I have probably over shared here so I do apologise but I just wanted you to know that I understand about feeling like your circle of friends or even family is rapidly shrinking.

I do like what you said about “speaking your truth finds your true people”. I am sure that is a good place to start, some people will appreciate that and I’m sure there are some that won’t but it’s a quality that I admire.

good luck with your journey 

Thanks for that, Chloe. I'm so used to being put back in my box whenever I offer my honest opinion that I might still keep a lid on that myself. It's not unreasonable, I guess, to have to meet people half way, even if I'm not being entirely authentic. I was planning to do a bit more of the "standing up for myself" and "lessening my people pleasing", though. Mostly just notions I have rattling around in my head that I won't be browbeaten into giving a quick answer to a question if I'm genuinely struggling to comprehend what's going on, or that I will put less pressure on myself to mingle and chat at family gatherings, etc. and infodump with fewer apologies. I'd be too self-conscious to go all stimmy, but if I'm doing little stims that someone else lets me know are mildly irritating (pacing, fidgeting with my hands, etc.), I'll just tell them to live with it. Baby steps, I suppose.

Do you have any tips or words of wisdom? Anything that's working really well for you so far? Particularly with respect to those friends of yours who haven't run for the hills. How have they reacted?

Hello that’s absolutely fine, I think it’s my honesty and my clarity , less eye contact, some stimming, changing speech patterns , slower more pauses, standing up for myself , lessening my people pleasing. I think it’s the clarity and honesty, people react so badly , I never intentionally hurt it’s just me being me , it’s my opinions and they are sometimes to big for others to take when they’ve been used to a sweet lady who made herself small to please everyone else. I also think just telling people I’m autistic alone has caused the distance, I haven’t unmasked in front of my mum and she’s just plain withdrawn from me just because of my diagnosis 

I find that all I personally need is just a handful of people I know are safe to unmask around, and then I can at least partially mask around everyone else. A few people in my family, a few in my friend group, and a few at my workplace. I make sure to hang around those “safe people” to recharge and become more capable of masking.

Chloe1980 said:

Has anyone else found since diagnosis that people dropping away as you start to unmask?

If you broadcast the fact you are autistic then I found many people will exhibit that they have a stigma of any mental health issue and basically treat you like a leper - they lack the understanding of it and probably fear it so just fade away.

I've recently found that many of my family are autistic and they all keep very quiet about it due to the adverse response from others.

I found it much easier to partially mask when socialising to make others feel at ease around me. The changes I've made to my life allow me a lot more energy and I can comfortably mask for modest periods of time so it is no real issue for me, plus allows me to enjoy some aspects of socialising.

In essence the world isn't ready for us in our natural state so you can consider this if you want to maintain normal interactions with it or be your true self and struggle to find those who will accept you.

Hi Chloe. I'm gearing up to peel a few layers off my own mask, so I'd be interested to hear more about your experience. What aspects of the real you do you think went down better or worse than others? A very personal question, of course, so feel free to ignore it. No offence taken in advance.

I wonder if people feel deceived as the person they saw is not the real you. Then they don't know whether to trust you.

Some may be happy to adjust but others may not.

You may have to keep some masking if you have people you really value.

Do what makes you happiest. Some compromise may be needed as nothing is perfect 

I think if there was any level of fear that others may see or behave differently towards you once they understood you were autistic this may play a part? Depends, what do you think? Are you the type who is socially anxious and maybe projects what you think other people think about you onto them and convince yourself that’s what they believe? I think for us newly diagnosed with autism it’s a huge life changing moment and we wonder why others aren’t more interested or coming over to speak with us in depth about this new revelation. They are either too busy in their own lives and facing their own struggles or they lack insight in other people’s emotions themselves. I have found this forum particularly helpful when it comes to finding others with similar experiences of autism although it being a spectrum no one will fall exactly onto the same place on that spectrum. 

Hello Chloe1980,

I just wanted to welcome you to the community and hope you find lots of support here. I am sure members will offer advice and support. 

In the meantime may I direct you to the following advice pages should you wish to explore. 

Diagnosis: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis

Friendships: https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships

Mental health and wellbeing: https://www.autism.org.uk/advice-and-guidance/topics/mental-health-and-wellbeing

With best wishes, 

Anna Mod