Published on 12, July, 2020
Hello all.
I've never joined a community forum before or thought I could be Autistic until my little beauty was diagnosed. I always thought it was my x husband who appeared on the spectrum because of his stereotypical traits. The more my daughter grows and the more I research females on the spectrum, the more I suspect I could be. I am feeling very anxious now knowing when I will be assessed, what it will entail and what the outcome will be. I'm wondering with the NHS being so underfunded to start with never mind Covid that I may not be able to access specific help if I do receive a diagnosis. I also wonder if I don't receive a diagnosis how I am going to navigate my life with my ongoing struggle with daily things that others can do easily - SHOPPING CENTRES!!!!!!!! I do love socialising which's why I never thought I could be Autistic but I've realised that I only enjoy socialising with people who are deep and philosophical, I hate small talk and bitchiness. There are so many things about me that I thought everyone felt. I am now beginning to understand that the things that I find tough are not conducive to the majority as I had always believed.....
There's a lot to my first post because I have a lot going on in my mind about it all. I'm wondering what peoples thoughts are about the diagnostic process and if it leads to more support and understanding? I'm wondering if others also struggle with shopping centres but are social? I'm also intrigued to hear if people on the spectrum want to apply a small kick to the behinds of people who say "I'm fine" when evidently they are not......
Thanks for listening.
I look forward to hearing your views.
H. :-)
Hi
I was diagnosed at 40 about 6 months ago. I am very social. I like talking to most people, I do enjoy some small talk though but I find deep and meaningful too much if I don't know people so I am different that way. However I dislike shopping centres and places that are really loud and busy. I can cope in some places for a short while if I really want to be there, but usually I just won't go in the first place. I never realised until recently just how much I avoid some things as I just thought that I was independent and knew my own mind. I love meeting people but I just won't go if it is in a location that I don't like. It has only been recently that when I have tried going to places I have been overwhelmed and sometimes panicking and just run off/out. I have literally just ran off on friends and family and only remembered to ring them when I was outside. I spent over half an hour waiting in the cold at the far end of a random field rather than go round the fair rides this bonfire night. But I was happy enough :-).
I suggest just do what you want whilst you wait for the assessment. If you don't want to go for whatever reason then don't. Autistic or not sometimes we all don't enjoy things and that's fine. You don't have to give people a reason for not going to the shops or whatever you don't want to do. Honestly that has been my biggest breakthrough in the past 2 years. A counsellor helped me at first because I found not explaining myself sooo hard, but she told me just say that you don't want to go and then nothing else. I did and to 98% of times people were just like ''okay''. My very close family members found it very odd for a while and I just said because I didn't want to and I don't want to have to explain why. They didn't accept my answer at first but I just stayed silent listening to them waffle on why I should go and then after ages I simply said I told you my answer and carried on doing what I was doing. After the first few times it was soooo easy after that and now I don't explain anything :-). It's really hard at first but it is fantastic once you can do it. I use to explain my life decisions to everyone and anyone and its so refreshing. Strangers or work associates don't even care and people don't dislike me when I don't tell them my life story like I use to worry about. Just be you and for the I'm fine people if they are the I'm fine when really they want you to start asking them questions because they always do that then I hear you. I don't do that anymore either. I just say well I am glad that you are having a nice day and walk off lol.... I am unsure if I always get those social queues right though so I don't offer help now unless someone asks in case I get it wrong and I know them well. I have recently learnt that not everyone who asks for help/advice wants the truth and I have been too honest with them :-/. Turns out that they just wanted 'oh poor you that's awful' and I didn't realise lol.
If you want to know about the actual assessment then this was my experience:
It took me 18 months on the waiting list but then 2 months to actually get onto the list from my referral. I know that Covid put them all behind so the lost is a lot longer than it was :-(. I would ask the team what the waiting time is in your area as mine were open with me and they did say 18 months and it was. I rang up after 12 months to see if it had gotten any longer. (They couldn't tell me where I was on the list which was frustrating).
In my assessment the woman had a bit booklet asking me a question and then making notes in it. She asked me questions in order starting at now (but this was very brief, then as a baby and toddler in the booklet section 0-5, then about 7-13, then older teenager. For me it was a lot of focusing on how I was when I was younger (below age 10). She spent 6 hours with me asking questions and before the meeting she had read over my psychological reports (I had been seeking help for a few years because despite being successful in my career I was struggling with relationships). The day after she spoke to my Mum on the phone because I couldn't remember much about when I was younger. Then she took the booklet and wrote an overall report and discussed it with a team of 8 people and together they all made a diagnosis of autism. I was given the feedback at the end of that week in a meeting.
Questions she asked me about when I was below age 13 included:
How did I play as a child (after not being able to answer this myself other than just running around lol she clarified it with my Mum asking did I make voices or do any pretend play, did I point at things that I wanted, did I copy anything people said, did I respond when my name was called, what age did I walk, talk, did I walk on my tip toes, how did I play with other children, did I have friends, what types friendships, how good was I at following instructions, how did I find school..... There were lots more but I can only remember these.
The questions were very open ended and she didn't prompt me because she wants to see what you say and not bias your answers.
I hope that helps.
Hi Echo,
Thank you very much for your honest reply. On that point, I think it's very important to be honest in a tactful way and if people can't handle it then it's their prerogative, Like you said - just be you. I'm going to use your approach with the "I'm fine" people as it uses less energy and it made me laugh out loud. Teee heee!
I'm glad you broke down the assessment process for me as this is the information I was looking for.
I hope that now you have a diagnosis the services you may need will be more accessible for you. :-)