Published on 12, July, 2020
hi, i'm iona and i'm 17 (but 18 in just under two weeks!!!!)
i'm waiting on my a-level results today which is why i'm still up... but aside from that today (well now tomorrow) i was diagnosed with asd. my assessment started when i was 15 and finished when i just turned 17 through camhs, i didn't receive a diagnosis, but my current team decided to relook at the previous assessment and complete some extra details and came to the conclusion that asd would be a fitting diagnosis.
throughout the first assessment, the whole process felt so awful but now.... i'm more okay with it (i've had years to consider this as a possibility) but of course by being an over-thinker, i'm not okay with the fact that i'm okay with it. i've had a lot of mental health difficulties that led them to consider autism in the first place and now i'm not sure how to understand myself. in many ways it feels like another label that simply states instead of explains if that makes sense. i think the understanding will come, but i just feel so alone in it and i have such difficulty sharing this information (or any more-personal information) with my friends and wider family which ultimately makes me feel more alone.
this is a long winded explanation but honestly i just wondered if anyone had any advice/insight on how to get through this stage, and even any advice on how i can talk to my friends about it without feeling like i'm piling onto them. i'm the person who tries to do anything to make other people more comfortable but i have trouble understanding that they will do the same for me (even when i know rationally that they will).
this diagnosis does explain so much in my life and why i've found growing up so hard, i'm wondering if it will get easier. i can't help but see this as a burden for those around me... (again, realistically i know that it isn't.... but i can't seem to stop that thought consuming my head.)
anyway, just feeling lonely and wondering if anyone has any thoughts or advice on this.
i don't know if any of this made any sense, but thanks for reading xo
francesca said: i just feel so alone in it
I really wish for you to know: that you are not alone with it.
Welcome to our Community. You have described four significant points of transformation to which you are acclimatising (receiving A Level results, anticipating turning 18, working on your mental health, learning how to best support your Autism). Any one of those topics would be quite enough for anyone to navigate - please do give yourself permission to slowly work through those life experiences.
In tthe UK, while your are between 18 and 25 years of age there is usually a greater range of support available to you from an Autism support perspective than you might experience above the 25 age group - so it is a good idea to explore with your current support Team all the pathways potentially open to you in your local area. What I am saying is; you do not need to navigaate everything all by yourself.
When it comes to "labels" versus "needs" you raise good points. You are to be celebrated, respected and accommodated as a unique person who may well be able to thrive even better by deploying some adjustments in support of your "needs". (You are not defined by (how ever many) "labels" might be associated with or attributed to your "needs").
Some people with the Autism identification / formal diagnosis view Autism as part of their identity - however, that is not the case for everyone.
When it comes to telling your friends - take your time - there is no necessity to rush to tell people (it is not an obligation). Those people who are your good close friends would likely wish to support your feelings and needs (it does not mean they must know your labels - that is up to you - it is in your gift to share that information with them - if you feel it is safe to do so and you believe you want to tell them - but you do not have to tell them - you might think about it and feel that you need more time to get used to the information before you take that step of sharing it).
When it comes to friends who are really more like acquaintances - you might need to think of it as something similar to neighbours near where you live (it might seem easy to become more friendly with a neighbour ...but if you find they are not quite right for you after all ...it is then not always quite so easy to then step away a bit from being quite so friendly at a later date. What I mean is; a bit more caution might be prudent when you are really thinking about telling acquaintances as opposed to your real world, close, long-term, good friends.
There can be a balance of benefits versus risks of drawbacks to be considered when you are learning about when / where / with whom to disclose your Autism (something similar can apply to your work on supporting your mental health too). In the early stages of you knowing about and learning about your Autism; you might be on safer ground sharing your feelings and needs with your good friends as opposed to feeling compelled to getting into the details of labels.
Sharing labels can take some extra preparation - as you might find you would also need to think about whether people are likely to be well educated about Autism - as it relates to the peron in front of them - i.e. you (as opposed to something of half-information they might have seen about a ficticious character in a film / movie or TV programme). People can have surprisingly poor knowledge about the vast range of Autistic people and what different ways friends can be helpful and supportive towards the particlular Autistic friend they happen to know (and you might not have yet reached the level of having finished thinking about and experimenting with it for your own benefit). When you are ready, and your friends have some help (if necessary) to become suitably educated, together you will be able to start working out - what it might take to best suit you all.
A couple of real world examples from my own experience:
1) one of my good neighbours knows I am not thrilled about dropping in to their house ad hoc for coffee and a chat (I prefer to know I am expected). They also know I am not usually comforable arranging to join them for coffee at their house ...only to discover there are unexpected people there too. That neighbour likes to include me in things but does not put pressure on me to conform to NT ways of doing things. Therefore, they sometimes will drop me an email letting me know I am welcome for coffee and that (named people) will be there too. It is via email so as not to put me on the spot (gives me processing time). There is no drama if I feel it is not the event for me (they know some days I have more "adventure" energy available than other times). I just let my neighbour know whether I am attending - so they are not waiting for me to join in before they serve coffee to everyone. My good neighbour has not been told I am Autistic - they are still respecting my feelings and needs while including me in social events within my variable capabilities. I don't know whether my good neigbour knows / has worked out I am an Autistic person - it is not something conditional on our friendship or my inclusion (my neighbour might just assume I am shy - for all I know).
2) an ex-colleague, long-term, good close friend of mine has not been told I am Autistic (although I suspect they have worked it out and just not made a fuss about that realisation). We share liking to meet for lunch somewhere when we have news about having been somewhere interesting (the one wants to share with the other person) - else, one / other / both are grumpy about something in our life / lives and we want to "put the world to rights" with someone with a healthy distance from the situation being battled. My friend knows I like to know in plenty of time where we might meet for lunch (so I can research it to my need), and we tend to take it in turns suggesting the venue for our next lunch together. We choose not to meet in each other's home. We are aware of and sensitive to each other in terms of e.g. a menu supportive of dietary restrictions / current medical treatment / mental health pressures / physical energy levels / travel options available - i.e. whatever the current requirements might be as life throws us different situations - and we tend to suggest lunch venues which we think the other would likely best cope with OK at the given meet up. Whether either one or both of us is (or might be) neurodivergent does not feature - we are just doing our best to support each other (as best we can) given the point within life's journey we respectively find ourselves. Sometimes, there needs to be quite a long gap between those lunches (life got in the way) - no matter, we can pick up with our ready conversation as though we had actually met the day before. Yes, my friend can exhaust me. And yes, some of my particular interests may not match well onto those of my friend - neither thing is a problem - we have found our way to navigate enjoying being a friend to each other..
thanks for the reply, i've really appreciated all the support that i've had from this post. it has just been an extra added layer of information to navigate on top of what is already an intense period. i do have friends that are aware of my needs buy yeah... understanding how to tell them in a way that doesn't lead them to just see me as a stereotype is something that i need to think about. i'm glad that they know me and i'm currently (and for the first time really in my life!!) fairly secure within my friendships.
my parents (dad especially) is up for telling everyone, mainly the wider family, and i'm not sure that that is what i want. i understand his reasonings but knowing them, it very possibly could be used to further stereotype me which i don't want!! however, i do think we will be able to further talk about that and come to a conclusion together. this label is new to all of us in my family and it will probably just take a while to understand that.
it is all so confusing, but from the replies to this post, i can see the community here and that is a really lovely thing. i'm feeling positive about becoming an 'adult' in the eyes of services because, you're right, it does open up some opportunities for support. my adult care co-ordinator has already explored some options so that makes me hopeful that i'm in the right place!!!