Terrified to get diagnosed

Ah okay; thanks

Unfortunately, there's no shiny certificate :-( I received an official letter from the NHS stating my diagnosis a few days after my assessment as I'd asked for proof for reasonable adjustments at work. The full report was about a month after that.

Thats given me a big relief, thanks! After the assessment, how long did it take to get the official diagnosis on paper - is it like a certificate or something?

As others have said don't worry too much about the assessment. Most people with autism have a spikey profile, which means they find some areas more difficult than others. I have a good imagination and read the story part out in character. There was also an assessment to do with faces and I only got two wrong out of about 36.

It was the interview section that made the difference for me as this highlighted the difficulties I face. I wasn't talking to my family at the time so I attended the assessment alone and comment on my childhood myself. My assessment lasted three hours but within the first 40 minutes, I was told that the report would be stating I am autistic.

Wow thanks so much. This was sooo helpful and I’ll let you know if I have anymore questions but this reassured me about how I should behave.

I'm glad I could help in some way :) 

Hopefully your uni will be accommodating. I would definitely suggest talking to the mental health team at the uni to ask for some advice. 

Good luck with it all !! 

Ok. Remember every autistic is different so it doesn’t matter that one area, your imagination you good at.

remember the questions are designed a specific way. So you be be good at imagination but not in the way they are looking for if that makes sense.

so I took my wife and she only had knowledge of me from 19. My mum is n cut to useless. In the questionnaire they send out after referral there is one for Somone who remembers you as a child. No more information was given in this than what you described when you asked your mum.

as for stunning, I’m always very camouflaging in life. And I purposely didn’t in the assesment. After all that’s what they are there to observe right. So I was incredibly stressed and let them see that. I do t really have a specific stim tbh but I was very fidgety and I think I looked her in the eye like twice favouring looking out the window. My wife said I looked like I was on the verge of a breakdown.

But don’t worry about stimming. Let them see it.

i too was worried I wouldn’t get the diagnosis. For two years almost I’ve identified as autistic and it wasn’t until a few weeks before when Somone mentioned it, what if your not? I couldn’t get my head round that scenario. I was certain.

so a little more info, it was just me for 1 hour answering questions. Then the second hour it was me and my wife. 

It is really helpful and they advise you take Somone with you to confirm what your saying.

you don’t have to but it’s harder for them to asses otherwise.

any more questions?

This is actually a very good point as I am moving away. I didn’t even think about contacting my university about this and it would probably be easier for me to wait. I’ll try and email someone about it because an issue I have right now is that I got stuck with a shared bathroom accommodation (which gives me so much anxiety I can’t bare it) so maybe if they knew about my autism they would help me change that. When I was applying for my student finance I saw the section about having autism and my heart dropped because I was like oh, that could be me. Anyway thanks so much for this! I wouldn’t want to get caught up in that whole transferring business because I’m moving to a whole new city that’s pretty far.

Thanks for replying. I’ll number my questions within this response.

I’ve watched some videos about the assessment and it sounds similar to what you said. I’m a bit worried that I won’t be “autistic” enough because something that I have a lot of is imagination, I was quite quiet as a kid so I was always inside my own head so I turned to creativity. (1) May I ask what questions they had about development because I don’t really remember much about my childhood. I asked my mum things about me as a baby, she said I was a very straight faced baby and I wouldn’t interact with anyone outside my immediate family or let them hold me. If people called my name I would just stare at them and not respond. She got a bit curious as to why I was asking so I quickly changed the topic. 

Also (2) what sort of questions were asked about your personal behaviour and (3) did you find that you stimmed a lot because of the stress? (Recently I’ve began rocking back and forth which is pretty awkward in public but it’s hard to stop myself). 

It’s nice to hear from someone in the same position. This gave me a little more courage haha. I hope your assessment goes well (I’m not sure if ‘well’ is the right word but hopefully you know what I mean). Keeping it a secret is so hard when I think about it so much. I wonder if I’ll tell my family when I get the diagnosis.

Thank you!

I'm sorry your facing this alone, however, coming to the realisation that you may be autistic whilst about to start uni is amazing timing as they is a lot of support in higher education.

If I were you I'd write down all of the reasons you believe you are autistic in a letter and give this to your doctor. This will enable you to get across everything you want to. Are you planning on moving away to uni? If you are you might be better to wait until September and then approach your GP in your new area as the assessment would be carried out under your new NHS authority and it could save any confusion with you being transferred onto different waiting lists.

To get assessed in my area I was asked to fill in a screener questionnaire, which I sent off to the local autism unit. I accompanied this with 8 sides of A3, which outlined examples of how I behaved in an autistic way. These examples were mapped out against the DSM-V criteria - mamapineappleblog.wordpress.com/.../

Have you approached your university’s disability department about your suspicions? They may be able to put adjustments in place to help you with the challenges you face, such as having access to a low sensory environment in the library. There are even a few university’s who will pay for your autism assessment so that you can receive extra support asap. Once you have your official diagnosis you can also apply for the Disabled Students Allowances. This could pay for an autism mentor to help you to develop coping strategies

Hey, don’t be scared, now I know that’s ridiculous to say to an autistic but I’ll tell you why.

last week I had my assesment and officially diagnosed as autistic, I’m 38.

i understand thinking of things to tell the doctor is hard. Best way is to spend a couple of weeks making a detailed list of all your traits. Mine was a couple of pages when I saw my doctor to around 12 pages by the time I had my assesment.

i wouldn’t worry about your parents. The diagnoses is for you! Once your there you can choose to tell them or not.

there really arnt that many steps to a diagnoses, you see the go and get referred, once they receive the referral they send a questionnaire which you fill out, which ask many details of why you want to get diagnosed and you difficulties and history. 

May they point they then decide if you go on the waiting get list if you do it’s actually the hardest bit. It’s a cas if waiting. In my area it was 14 months.

you then get your appointment though, again have I got prepared to hand over. I won’t lie and will say the assesment is stressful. Mine was around 2 hours. It really does help if you take Somone who’s known you with you. You pretty much get asked questions about yourself, which you have plenty of time to prepare for, you just have to be honest. There also a few other little test that can be stressful. For example I was asked to look at a book, no words just very confusing pictures about a boy having a dream. I didn’t get it.

also I was asked to have 5 random objects and make up a story, instant panic and I said I didn’t want to do it. Well I couldn’t do it.

My assesment was the first time anyone other than my wife has seen how stressed and anxious I was as I’m usually very good at camouflaging. 

But you sound a lot like me, I became obsessed with autism but at the same time without that official diagnoses I couldn’t say to anyone out side my immediate family. 

But the diagnoses was a relief. I knew I was right. I can now tell work and it’s amazing when you really start to look at your life how much things really are affected.

please ask any questions you have. I’m a very honest person (I mean I’m austistic) 

so maore than happy to answer any questions 

What you are describing is very similar to my experience! I also identify strongly with the symptoms and felt that I really needed to know, but my parents / school teachers have similar views as your parents, and I was also very afraid of being misdiagnosed...so I keep delaying asking for an assessment for a really long time (many years). But the feelings of wanting to know and being afraid never really faded away and kept bothering me. I finally went to my GP this year and now waiting for an assessment. I wish I had been able to have an assessment earlier, and I was once really close to asking for one, having written down why I think I might have Aspergers, but then failed in getting the courage to push for it. But gradually I was more able to accept how I felt about all this and go through with the process. I became mentally ready. I am in a similar situation as you, as I will have to attend the assessment alone, and keep it a secret. I posted here a couple months ago asking about the diagnosis experiences that people who went alone had. And it turned out that it was possible to go to an assessment by yourself, quite encouraging. So I really understand what you are going through, and it may take time to settle things emotionally, and you are allowed to relax a bit if it sometimes feels too overwhelming. Once you feel ready, I wish you the best of luck in asking your GP. 

This was actually really helpful because at least someone was in my position as well. Uni sounds troubling but hopefully knowing that I could get help will push me to go through with this whole thing. In school I suffered from a lot of sensory overloads which lead to me getting really hot/shortness of breath but I would usually ask to go the bathroom and then cry in the toilet and go and take deep breaths and flap my hands until I calmed down. Background noise in lessons was honestly painful so any extra help in uni would be much appreciated.

I’ve been thinking about just writing everything out and having it with me when I go to the GP because I know I won’t be able to talk and my eye contact will already be bad so I can just look at the paper lol. Your girlfriend seems so lovely I really wish I could tell someone about this whole thing. At the same time if I go through it all alone i’ll feel more accomplished because I’m stubborn and want to do things by myself most of the time lol. Thanks so much for the reply. 

Hiya! I just posted a very similar thread about looking for an autism diagnosis. Firstly none of that is rediculous rambling, I totally get what you mean and honestly it's nice to know I'm not the only one. It's scary looking for a diagnosis because when you've finally found something that fits, you don't want that to be taken away. And because ASD in women very rarely gets picked up on, you kind of have to fight for the diagnosis, whilst also still struggling with it internally. 

Thankfully, my girlfriend goes to doctors appointments with me when I am too anxious to go alone, as the last time I went alone I had a meltdown for half an hour in the doctors office. 

At the doctors appointment, you could try mentioning at the beginning that you stuggle to articulate what you are trying to get help with. This is something I do with every new doctor I see because it allows them to take into consideration that you might not be able to fully explain what you are trying to.

I know people often advise to write everything down, but I personally find this more anxiety provoking than anything else and it often leads to a meltdown. But it works for some poeple :) 

Also I have been through the University experience without a diagnosis and it lead to a lot of difficulties, and I experienced a lot of rejection from peers (bit of a common theme in my life... oh the joys of autism). Ultimately I dropped out after repeating my last year three times and having yet another huge nervous breakdown at the end of the January term. 

Basically I don't have much advice because I'm a bit all over the place too haha, but I have 6 years on you so maybe you can learn from my mistakes .

From J