Published on 12, July, 2020
I am scared I will never be assessed. I am told I am half way down the list. My local autism assessment team have been working very hard and the waiting list is said to be just two years now, but with all the virus chaos and the economy collapsing, will I ever be assessed?
I know no one can answer this question, but it is quite a concern.
I’d be a little cautious with online tests as they haven’t necessarily been developed by professionals in the field. The ones the diognosticans use on the other hand tend to be more reliable. I’m not slamming all online resources, some may be fine, but it’s best to be careful.
I have tried a few online tests as a guide. One also gave this funny brain like picture...
It is wierd that the online tests seem to show that I am deeper on the autism side then I thought so they may not be that accurate, as apart from partial and full shutdowns and a few other things, I won't say that I have a severe dissability through it? I mean...
Not sure what I mean...
Well. Yes, I am struggling in areas now after the last few burnouts. But in my past I was able to mask. I thought everyone masked, though I couldn't quite work it out how they were able to mask to the degree that they did. It never occurred to me that most others were not masking!
The wierd thing was, that if I came accross someone who was obviously stimming, I would think "There's something wrong with him... But at the same time I could easily connect with him but did not know how or why where other children my age (Looking back to childhood and school years) could not. Little did I know that I stimmed but in other more disguised ways!
So it all came as a shock to me to discover that I maybe on the spectrum. I still don't know for sure, but at least at the age of 47, I have finally been able to find out that what I experiwnce are partial and full shutdowns, and as I now know what they are and now know what causes them (I could not work it out before as years ago a doctor said it was "Some sort if allergy" and it was a process of elimination. So for most of my life I had been altering diets to find out what it was.. And nothing seemed to work as I was looking in all the wrong directions... Despite many people suggesting that I had autism or aspergers... I thought they were playing a prank on me, and even when complete strangers said that to me I was looking round the corners to see if someone I know was hiding and had put them up to it to prank me! I was like "Why do they say that?"
But I did not know what autism actually was. I know now and Ohhh! It has been quite a journey!
Look. I may not have enough traits to be autistic. But I can certainly understand to a degree that I don't know what an NT is. After learning lots and lots and lots in quite a depth, in such a short space of time about autism, as when I latch onto a subject, "I'm in!" I mean... I don't let go! So I know that I have traits and I can't hide that. But am I on the spectrum?
Haha. I feel like saying to everyone "Place your bets!" Yes or no... Hahahahaha!
The scales vary depending which screening tool they are using, but none are as restrictive as straight forward yes or no answers. Some gave more range than others though it is often a case of finding the best fit answer.
Proably better having a scale of 1 to 7 or 1 to 10. 1 to 5 is too restrictive where I can be stuck on an inbetween!
But as long as there is someone there I can explain to so I can make a decision... :) I am normally fine. I can leave the undecided ones and go back to them later. Yes and no is the worst ones for me!
Pretty much all the screening I’ve done has scales like 1 to 5 or strongly agree through to strongly disagree so there shouldn’t be too many yes or no responses needed :)
Where I will need help is where there is a question and there is a yes or no answer, and I fit somewhere in the middle. It is why I really struggle with online forms. I much prefer paper forms where I can write an explanation by the side.
The screening shouldn’t be influenced by intelligence if you answer honestly
Another issue is I am slightly above average intelligence that I may sway the tests to make it look like I am autistic if I am not, or make it look like I am not if I am.
I was told that it is difficult to do.
It must be hard to design a test.
This is where the screening tools they use to help diagnose will really help :)
A lady friend of mine who I found on another autism site who is very observent of my ways, and she has spent years helping autistic people... I asked her if she could tell me any traits she noticed that I had. I could thing of maybe four or five at the most. She started to come out with a long list. I said to slow down a bit so I could write them down. Only two I questioned if I had them and one was that she said I had a monotone voice. Last time we spoke on the phone she said it wasn't monotone but the first time we met she said it was? (I was nurvous I guess!)
But what surprized me was I wrote down a list of 30 traits! Last May when I asked one of my doctors if I may have autism (Expecting a yes or no answer) I only knew I had one trait. So I know I have a few traits as I found out more. Things that I had just assumed were part of my individual character.... It has reached a point where I don't know what is a trait and what is the real me behind the traits!
I think it will even if it came back as not being ASD, it’s still a bit more clarity and one less thing to include as a possibility.
Changing the future means that I need confirmation of where I stand. I have learnt soo much recently about myself but there is more to learn, and I am hoping the assessment will help confirm my suspicions and tell me more. (Some triggers I have not worked out yet. Long story).
Hindsight is a wonderful thing as they say, thing is whilst we can’t change the past, we can the future, and that’s what’s critical for people like us
I am not as young as I was. I have passed my mid 40's. Worst time I had was in school and even worse in college. If only I had been home schooled as my Mum is such a natural teacher...
She sounds like a valuable asset to have so you are lucky there. With your mum, a diagnosis may help her better understand as she will have something to research, sadly ASD has long been overlooked so older generations are often less understanding because they dint know enough about it.
The lady at the jobcentre took me to see a workcoach and this other lady. It is like she knows exactly how I feel and even knew exactly how to deal with me as while we were in this little room with the lady that I normally see, I reached a point where I started partly shutting down and I could feel myself on the fringes of shutting down. When I apologised as what she was saying just was not registering with me... She was absolutely amazing. If I do have autism, then she has a child with autism or she has it herself. It is the first time ever I have met someone who knkws what to do. Even my Mum does not know.. Though now my Mum is a lot better as she has learnt to stop saying things like "Ignore it and it will go away" and she has learnt that I need quiet to recover. (As in the past with my Mum, I was often having full shutdowns when she would keep talking to me when in a partial shutdown... Is only recently with knowing they are shutdowns I have been able to explain to her because I never knew what they were myself. It has made the world of difference too!)
That wasn’t too much :) it’s important that you say what you need to say - it’s a release from the pent up anxieties this is causing and I’m always happy to listen :) well, in the case of a forum it’s more reading than listening but you get what I mean :-p
It sounds like you have a good work coach at the job centre. My advice would be to keep engaging with them because loving with no income at all wouldn’t be good for you. Also once this virus is over and we can all leave home, there may be autism support groups in your area. This forum is also full of decent people too, so a valuable tool to keep
The lockdown is tough and finding a way through it will have its challenges and what works for one person might not another, but like I said if you ever want a chat, I’m here and my messenger settings allow anyone to message me :)
Thank you for the reply. I hope I will be assessed as I reached the point where I had no way forward. If it wasn't for the kind hearted people I have met in recent months who have helped me like the autism team, and the lady at the benefits office (I have had years of not working and not facing signing on and in the last 15 years only being able to work low hours part time work until it reached the point where that was too much for me).
I saw the autism team on an openday and the first time ever I opened up. They were able to write to my doctor for a sicknote. I had help then to claim benefits. Now officially I need to look for work but fortunately the lady in the benefits office says I don't have to yet until I am ready at my pace (A huge relief) and they will be helping me to find a job that will not trigger any shutdowns. They did want me to appeal the decision to need to work, but I just can't go through the appeals process, and if the current situation means... Well. If I can't andle the stress I can always walk out and get no income. I have survived on no income before and I can do it again. (I have a life long train collection I can slowly sell though at the moment, this is not an option with this virus lockdown which is making me feel soo much panicky inside).
Anyway. Without an assessment I cant challenge things. I have nothing official. My doctor does not even know any details that I have been having because I normally clam up when visiting doctors, and have to talk about things that are not relevent to get my mind to talk again...
(I never can come straight to the point).
Anyway. Yes. I need to be patient.
With this lockdown my main means to de-stress is not available to me. So my stomache is constantly half way up my throat!
So sorry for typing too much...
It’s been the case for some time that there is far greater demand than can be met by current provisions. It will happen but it really is a case of being patient - but I can assure you it will happen :)