Published on 12, July, 2020
Hi,
I have just been diagnosed with Autism at the age of 29. I have special interests in hamster genetics, Pokemon and Harry Potter. I’m still in shock from the diagnosis but it hasn’t yet been 24 hours since I was told the outcome of my assessment. I’m just now questioning what that now means for me, like what do I do to access support or help now I have a diagnosis. I have struggled to get a job my entire adult life as everything I am qualified for I struggle doing practically as it involves communication with others and a lot of small talk. I can do the theory behind it all but I can’t put it into practice. I was given the diagnosis at the end of the assessment as I ticked nearly every marker on their diagnostic test, there was only a couple that I didn’t tick. My parents are in denial so I can’t talk to them about it and I don’t know where to turn. The psychologist suggested the National Autistic Society as a starting point to look up information and she is going to send me some information to signpost me to other places when she sends out the official report.
Hi Pinkpixie,
I'm 23, been diagnosed for about 4 years now and I can tell you, knowing that your mental health has a name, it has symptoms and a wealth of research to examine... Is a little bit of a life saver- at least for me it was; for all the times in my adolescent life and childhood where I completely lost the plot began to make sense. When being diagnosed, it devastated me to learn that it was true; the condition is one with complexities- but it doesn't have to be.
The joke was, my empathy score was so low it was a shock because early on in life I'd taken an interest psychology and had an amazing grasp of it... Also before the formal diagnosis, and when I had suspicions- I was a healthcare assistant, so there was a lot of confusion for me in simply feeling like if I am autistic and that is under the category of low empathy, how could I want to do those things, but also how was I able to excel at them? ...
Well my reasons for saying this, is I've read your comments below and you seem to be expressing apprehension about your condition and about your future in work and whether you'll be satisfied and cope with the very real stress we struggle through.
Once I was diagnosed, I became depressed and became very isolated because I perceived the world to view me differently and that they would treat me differently. I really struggled to process that I was disabled in this way, it didn't make sense to me that I could feel completely 'normal' yet this new word that many people in my family share, was a complete alien to me as a fully grown adult.
I wasn't able to continue working at the time 4 years ago, I really wasn't able to communicate my needs, and had to make universal credit stretch as despite my position and obvious mental health problem, at that time PIP had (they've since reassessed and changed their minds) declared me fit for work... It can be a struggle, trust me. But my biggest failure to myself, was isolating myself... I'm still struggling with this, because I never nipped it in the bud (so to speak) at the time I knew I was beginning to develop a problem because I just couldn't tell anyone how I truly felt.
Your parents need to snap out of that denial- it doesn't help either of you! But I have to say in my own family, we are still learning about each other every day 4 years on, so give it time, they will come to understand in their own way soon and eventually you will be able to talk and laugh about it with them.
Communicating- as much as it feels like the enemy- is going to help you so much, in getting the support that you need. Hell, I even got myself a wipeboard checklist to make myself wash, tidy, go outside and that sort of thing, so I can visibly see when I'm no longer taking care of myself... But this also reports to my Partner/Carer whether I am still taking care of myself or not- because I severely struggling asking for help ever. But communicating that you have needs is essential in all relationships- perhaps you can write it down, a list of the things your parents need to understand and help you with?
If you can, seek for groups where Autistic people are meeting so you can literally see that you are not alone in this. Seek any kind of therapy, or support that you need too socially, its easy to believe that being autistic means you don't need friends, it kinda more means that you'll struggle with the interaction more than other people. You can do this, posting a question on here is the first step, as you're showing you do want to open up with people- just maybe asking the people directly around you is too scary.
You can use the NHS directory to find services, charities and the like local to you here: https://www.nhs.uk/service-search/other-services/Autism%20support%20groups/LocationSearch/310 All you do is type in your postcode/location and it bring up local support. In my local area, it seems that much is available for carers.
Also,
Tl;DR: The university can offer a lot of support. Try to access as much support that the university can give you, but be aware that you really have to be a good advocate for yourself or have someone help you, but for me, it has felt pretty inaccessible at times.
Also to answer your question below about university... I'm a UK student, I was given assessed and received some support... Most of which I never took up because it just seemed for me to complicate the process of education, and generally too socially demanding of me to receive what I had already been entitled to. I thought I would have the assessment and they would send me my stuff. Wrong! They sent me the assessment and I had to contact each provider for them to begin to process of sending me the equipment, that in the end I never used. They offered a variety of software that may help for notetaking, but alongside the other bits that gave, it seemed to just make the process of actually trying to learn longer so I never bothered. There was also an allowance for a monthly visits from a lifestyle coach, and an education coach- both of which I had to make the appointments with myself and get to know someone new- it seemed too difficult for me to process really at the very beginning of university when you're thrown into a unknown place.
They also provided the cheapest laptop they could afford that is completely unusable for anything- 4gb ram, it can't even keep up with Microsoft Word, let alone the software that was meant to help me note take, a pair of air plane headphones, and £80 yearly printer credit. They really tried, but they should just save their money imo. The most useful thing I've been given, is the support statement to get extra time to hand in my written work. I'm sure if I'd accessed the services, they would be useful, but the process to actually get the equipment and sort all that out- it took me the first year to get the laptop that was essentially a large coaster. It was too complicated for me to do it. So shame on them really.
My university is also meant to release lectures and documents immediately, to ensure that all those with support statements whom may not have been able to attend sessions, could access this at home... This is something that occasionally happened, and usually at the ones I was able to attend... Good thing for me, I'd done a significant amount of reading previous to joining the course, so I've kind of sailed through this degree so far...
I have been isolated and depressed for quite some time already as I just couldn't understand the world around me. I'm hoping now I know the reasons behind my struggles I can find like minded people to connect with that understand. A wipeboard checklist sounds like a good idea! I will get myself one of those. I live quite far away from my parents so they don't see me that often, my husband is the one that has to help me cope with everything.
I've looked locally for support groups with those with autism but the only ones I can find are for parents with autistic children. I will have another look on the NHS website you have given the link to, to make sure I haven't missed anything.
That sounds very challenging to have to organise all of the support that they offered yourself. I have attempted uni before but I really struggled with note taking and the time allowed in exams as I often struggled to understand the questions.
Is a support statement given by the university or do you need one beforehand from school? I'm glad you have sailed through your degree so far :)