Hi, I’m new and only just diagnosed

Hi there,

I am also newly diagnosed at the age of 26, got diagnosed 2 weeks ago. It seems like this is a recurrent occurrence for women especially.

I too am struggling on where to go from here, but we can all go through this confusing process together.

Im currently doing a bit of research around my diagnoses, which helps make things clearer for me. In terms of support and advice im unsure whats out there. Especially in terms of friendship, as i feel its a very isolating time at point of diagnosis, sometimes even after then actually. But im here if you need a chat.

I dont really have much contact with my family, none of them even knew i was going for an assessment or know my diagnoses now. So i can kinda imagine how youre feeling there.

Hope you gain some clarity. K x 

I'd definitely suggest that, one reason, it'll help alleviate the build up of anexity that comes with entering new spaces, new people. Last thing you want to be doing is just finding out about your resources when you're starting, us autistics need to plan ahead in most cases, y'know, just to be sure and ease our nerves. 

Hm, if you're having trouble with people not being able to imagine the differences you're enduring, try using the thinking analogy. I'm not sure if this will be the same for you, but when I 'think', it's visual in my head, words don't really appear, so visual aides were used a lot when I was younger, smiley faces, unhappy faces, that sort of thing. There's a particular name for this - escaping me at the moment - thing, but it's one of the ways you can separate those on the spectrum and the normies. 

The spectrum is so wide and varied, if you get into biology professionally finding out how we tick will be one hell of a project :P 

Also I just remembered, having chewing gum and a stress ball or ring / bracelet to spin can help with focusing or relieving tension, and sunglasses / baseball cap for bright light. It's all about protecting those energy levels!

Hi Pinkpixie, welcome and congratulations on having gone through the process of being diagnosed and finding some answers, and for sharing here. I was diagnosed at age 30 (I'm 32 now) and the overall experience has been very positive for me, although uphill. Hopefully here on the forum you will be able to significantly accelerate the process of self-care. It's also been a process of 'dropping the mask' so to speak which has taken me some time, and is still a journey, but absolutely worth it, I think, for the protection of energy levels and understand the self more. The adjustments I've made since the diagnosis that have helped me 1,000% are: buying noise-cancelling headphones and wearing these often (the first day I wore these, the relief was instant), buying discreet, transparent earplugs to help dim background sound, creating soothing playlists of non-verbal music to listen to, creating a timetable and buying a cheap, second hand smart watch that sets reminders for daily tasks, a physical diary with lists for meals / groceries needed / bill dates etc, and trying to keep at least one day at the weekend free to be completely alone. Some workplaces and universities have continuous assistance for people on the spectrum but I don't know very much about these yet - if you'd like some more info I will gladly do some digging and send you some links that might help. There are also beginning to be more companies that exclusively employ people on the spectrum, such as Auticon, who have an 'interview' process that requires no speaking at all if you don't want to but they ask you to complete a set of specially-designed tests, in an office designed for autistic people. I hope you're doing well, and this forum is a great place, I have only been here for one day and already feel more validated than ever before. (Also I love Pokemon and Harry Potter too!) Do let me know if you have any questions.

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 :) 

Would it be beneficial to contact the university in advance to see what they can do to help support me? I have a special interest in genetics and I spend a lot of time researching them, especially in hamsters and dogs. I'm now researching everything I can about high functioning autism to try and get a better understanding of it. I've done everything I can to help others to understand but I'm finding it very difficult to understand as I was especially good at masking when I was young. 

NAS66301 said:

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

I'm fed up to the back teeth with this catch-22 - not being able to get help because I don't have any help to help me get the help.

Not university for me, just service providers generally - local authority, charities, NHS, even specialist autism services - the lot of them. Even when I have finally overcome my executive and communication problems to make a first appointment, and have asserted as strongly as I'm able that I have extremely poor executive functioning, a powerful aversion to asking in the first place, an utter phobia of telephones, and no friends or family at hand to do it for me - same thing; leave me to book the next appointment myself, only possible by telephone, or give me a pile of paperwork to do that I'll inevitably rediscover under a pile of junk six months later. I finally dared to check my answering machine once, only to find that social services had called me to ask if I still wanted their help after an initial refusal - with a long-past deadline of one week to get back to them, otherwise assuming that I didn't.

If I could easily do these things, I wouldn't be seeking help in the first place, as they're by far the most debilitating aspects of my autism. If disability services can't manage to make "reasonable accommodations", then who the hell ever will? When it comes to disabilities, there is very much a "pecking order", I always feel.

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...  

It was a mix bag, if I'm honest. Started out in mainstream, but by primary one/two I was fast tracked towards the diagnosis. If anything, I'd say you've been diagnosed at the perfect time, well, in comparison to nineties, the theories and stratagems made are more helpful and beneficial than they ever were. 

I'd say no and yes, if that makes any sense. While I was cleared when I was young, even when you're clearly been labelled as having Autism, even the 'normals' who accept us can just have their weak points, they can disagree or decide at the moment no, this just isn't the case, but reality will last a lot longer than their muddled conception of it. If they just point blank refuse to accept it after ample time and proof, then that's problem Pink, out of your hands and you should just let it flow out of your mind; enough hassle in the world to deal with to include narrow minded folk in our lives. 

It would depend on which part of the UK you're in I'd imagine, here in Scotland, the colleges and universes tend to do very well in receiving and supporting us disabled dafties, it's more a case of looking into the particular resources on hand. I've a high functional pal who past through her biology uni studies easily, that was her hyper focus so it somewhat killed off the anxiety that came with your average worry in communication. Unless the samples start demanding conversation, I'm sure you'll do fine

I’m thinking of going back to university to do applied biology but I’m a bit apprehensive as I don’t know what support would be available. 
I love any big dogs, I find malamutes fascinating especially how they were brought back from the last 12 existing at the end of the war 

I don’t have a citizen’s advice near me, the closest one is over an hours drive away and I don’t drive so my husband would have to take me and he works full time. I have had a lot of difficulty with paying bills before now and my parents have had to pay them for me before I got taken to court over non payments. I’m hoping to find some people I can relate to here, it would be nice to talk to people that understand. 

I had no support throughout education so I don’t know what it’s like to have support. I was just thrown out of lessons a lot and suspended a few times for what they thought was bad behaviour. I get PIP already as I have health conditions but it’s due for renewal soon so I will definitely include it in my next form I have to fill in. Have you had trouble with relatives knowing and not willing to accept it? I’m thinking of going back to university to do applied biology but I’m worried about what support would be available. I’ve attempted university before but I failed as it was in childcare so it needed a lot of conversation all the time and reading the child’s emotions without them saying anything. 

welcome Pinkpixie

anyone interested in Hamster Genetics should be working in science somewhere :)

I watch Youtube videos on Malamutes and dream. My wife won't allow them. I stuck with my annoying Shitz Tsu !

Welcome, Pinkpixie!

Yes, I totally understand how it can be a bit of a shock to the system at first; it certainly was for me! It seems that most of us who get diagnosed in adulthood go through that for a while, but it does ease off over time as everything sinks in. The forums here are a great first place to turn - my experience is that talking with other autistic people is by far the best "therapy" that I've ever had; even the very best of professionals usually haven't haven't lived with the condition for decades!

One thing I will suggest is to see if you can get an appointment with your local Citizen's Advice Bureau. Although they may not be able to help you directly with things like benefit applications etc., they usually have a wealth of knowledge about what local charities and disability advocacy organisations there are locally - much more so than NHS staff, in my experience. Most of their offices have one or two members of staff who specialise in disability issues, so make sure to mention your new diagnosis when booking an appointment. My autism has got me into a lot of bother in the past with unpaid bills and things like that, and I can't speak highly enough of how brilliant they've been at helping me to get back on my feet.

You may even find a few people who you can shared your interest in genetics with here, too - not necessarily hamsters specifically, but as autism seems to have a lot of genetic components, it's quite common to find autistic people who've developed a bit of a fascination with it, as I have myself.

Best wishes.

We accept you, one of us one of us..

Heh, silly reference aside, welcome and somewhat congrats on finally getting some answers to what could and likely is the root cause of the problems as mentioned above, had my diagnosis for pretty much my whole life, so if you have any questions, feel free to pop them my way. One of the first things I'd suggest going straight and getting started on your PIP application, like you've said, finding employment is a kick in the teeth most of the time, with about seventy percent of us failing to find it, and barely fifteen percent getting full time at that. Every little helps us in the long term financially. Gods know, we ain't getting cured any time soon, that's for sure.

That's the most crucial part in my belief anywho, outside of that, there isn't really much else, at least that I know of. Autistic people get supported right up until they leave school, and the system isn't really designed to be able to manage helping us, which sucks. You go from a decent support structure out into the big ol' world and you're screwed if you aren't able to piece together some semblance of a main streamers life. 

My last paragraph of moaning aside, any questions, happy to answer.