Scared of going for a diagnosis

I'm very much impaired internally, externally I function well in everyday life- I don't need assistance in household, basic tasks etc. I have no issue managing my money (currently,  in the past I had) but I struggle doing things that are outside of my daily routine. For example buying clothes for myself and my daughter. Someone has to remind me and help me organise time for that. Someone has to inform me, that I have a hole somewhere or that I need new shoes. Otherwise I live in my own world and it doesn't even come to my mind to think about it. This problem solves my mom, who gives me quite much clothes for me and my daughter. These are usually second hand, but good quality. She asked me few times if I'm not offended for getting second hand clothes. I'm absolutely not, I don't care if it's new or not. I aldo don't care what is the logo, label etc. I'm happy when it lasts more than few washings. My husband controls my pacing (repetitive behaviours,  that used to impact severely my daily functioning in the past) my grandma looked after me, made sure that I shower and used to explain to me that I have to shower and why. I was a teenager at that time. So I used to be quite strongly impaired in my past, with support from some of my family members (although they are also toxic) I appear to be just a bit quirky. I also figured out many things on my own - for example managing meltdowns. 

Sometimes when I look back at myself in the past, I wonder how I managed it, to change so much and manage myself. I used to hear that im not suitable to function in this world. It hurt, it was true but I needed help with it. Nobody recognised that on time, they thought I was just stupid and problematic. My husband supports me a lot, although he does not really understand my struggles. He also does one more thing- talking to people,  on tge phone or live. For me it's terrible,  he does it very well with small talk etc. This way he gets things done.

I really enjoyed reading your thoughts on this, I think it's very relevant to what a lot of people worry about when going for a diagnosis and whether they'll 'count' or not!

Yes, because it's not only confirmation of the condition you have, but also description of your unique only yours experience (full report) written by a professional and it may help to find strategies to cope better. 

For me, getting a diagnosis was important, as I can learn more about the way I am and, crucially, explain that to others.

I would say that you're always going to wonder, as that probably won't go away 

I get the impression that you can live independently without support, however, for me the diagnosis was not about seeking support, it was about understanding (me, and those around me)

I already posted a reply here, but have some more thoughts. 

I researched today a phrase "where is the boundary between Broader Autism Phenotype and ASD. So first there was the information,  that in ASD the autistic traits cause an impairment in daily life. In BAP- not. But it's all not that 0-1, black and white, unfortunately. I like having everything clear and 0-1. But the whole spectrum is not that clear. It was even written, that the difference is often blurry. One person may be considered ASD (meeting the criteria) in certain environments (more demanding) and then if thus person gets support, they function better, then they may not be considered Autistic anymore. Which I find ridiculous,  because everything in life changes, but autism is (as professionals say) a life long condition. So for this reason I decided,  that even if I hear from my assessor, that I currently don't meet the criteria, I would still stay here, because I found my place here. For me a negative diagnosis would mean, that 1) the subjective opinion of this professional is that im not autistic enough; 2) there is probably no support for me out there anyway.

If in any circumstances I lose my closest family members,  then I would need an external help. Then I would suddenly fit the criteria. But taking the uncertainty and long waiting times, it could be crucial for me to have the diagnosis as soon as possible,  but it could be impossible. 

So all this is confusing for me, there are too many voices, opinions,  one assessor would give this dx, another one- not. The only thing I'm currently sure is that I have quite strong autistic traits, that are present since ever. I'm for sure BAP somewhere close to the ASD. Or ASD. I also found out, that many people considered "BAP" also struggle with anxiety and depression as a result of their autistic traits. 

I to had school reports, and they helped throw a light on things. Although some things you wonder why not picked up or taken further. In my case, maybe moving hence attending several different schools in different areas didnt help as I was always the new kid in my younger years and other kids had already bonded and formed friendships etc.

Wow sounds like it was very painful for you. I don't have reports, but I do have memories and things my parents have told me which are indicators. I hope this will be enough and definitely want to go through process now.

Thanks and I'm of very similar age and situation to you. It gives me a little bit of peace of mind that it will be ok to go ahead based on where I am

My parents were both deceased but had kept every school report plus health records from my early baby months. So the nhs assesor accepted these in lieu of a parent. The early months documents included references to limb issues and eating problems which she saw as relevant. The school reports contained many critical comments by teachers about my behaviour, attitudes, and sporting + academic failures. These hurt terribly at the time as my parents judged me as deliberately difficult and not trying hard enough. However these very reports which were traumatising to me as a child were highly valuable in securing the diagnosis 

Oh I should also point out that I didn't feel comfortable asking my parents to be my informants so I asked my husband who has known me for 18 years. I was worried they wouldn't accept that but they did. I mostly had to rely on my memories from childhood rather than any evidence but still got the diagnosis. Basically, don't feel like you can't try for a diagnosis without parents/historical evidence

Hi Alice, your experience feels very similar to mine. I'm 37 and have wondered for years but finally got the courage to go to my GP about a diagnosis before Xmas. I've now been diagnosed but still struggle with thinking it's all in my head, or that I've somehow tricked everyone. I'm not sure if those thoughts will ever really go away but I try to focus on the fact that the assessor clearly saw something in me that made her very confident in her diagnosis.

What I did was print off a list of autistic traits and highlighted the ones I saw in myself. I also listed some experiences from my life that I felt backed up my case. Then I just contacted my GP and requested a referral. That was the hardest part, but once you've done that you're 'in the system' and you'll know one way or another at the end. I took my husband with me to the Dr for support and my printed list in case I forgot what to say.

I hope this helps but let me know if you have any questions.

Hi Alice,

Thank you for reaching out to our online community.

Sorry to hear that you are feeling scared of going through a diagnosis. A lot of people experience this. You may find our diagnosis hub useful which also looks at the emotions associated with diagnosis.

https://www.autism.org.uk/advice-and-guidance/diagnosis

I hope you find this information useful.

Rishma Mod

Thanks for reply and sounds like you had quite a different experience to me in life. I don't know if I will ever talk to my parents about being Autistic, but that is a bridge I will cross if I want to. I'm learning that I don't need to explain what is happening with me, to them, to be myself. I'm still me with or without the diagnosis. I'm evolving to take care of myself is the main thing and if changes my relationship with my parents that is just an outcome. I've always been a bit of oversharer so again that is me learning that it doesn't have to be like that.

Sounds like you have it hard and I hope you have somewhere for support even if it is online here only. I am lucky to have a partner who has been understanding and they are neurodiverse too so that helps me feel less scared to speak to them on what is going on.

I can speak to people as much as I want, but it is only me who has power to start the diagnosis process. I think this is another way to help me get courage to go ahead.

Hi Alice,

I hope whatever I share doesnt offend anyone (I overthink a lot about everything).

I struggled through my entire life. I was academically strong, so school just pushed and pushed until I fell apart. I came out with fairly good grades but not without a cost. 

I went years not understanding how my brain worked. Doctors told me I had anxiety and depression, prescribed me talking therapy and sertraline, and told me to get on with yet. Yes, I was depressed. Yes I was anxious. But not in the traditional sense. I was depressed as I didnt understand the world around me and anxious that everyone hated me.

I went to a girls with autism conference in 2019 on behalf of the school SENCO, and it clicked that I was autistic. I was lucky enough to get my assessment through a charity.

However, the assessment made me feel exposed. A lot of what I had to say my parents knew nothing about. It was a confusing and emotional experience. But I came out with a diagnosis. It was the most empowering thing I had. It helped me make sense of who I was.

I had mixed reviews from my family members, with my Mum saying that I was lying and there was nothing wrong with me.

Assessments are nerve wrecking and make you feel awful. But having the power of a diagnosis really helped me understand who I was and stop apologising for being me.

I hope you find the same peace of mind as I did.

Bryony

Thanks lots of good advise and I keep reminding myself to be kind to myself.

The burnout I did have and was very lucky that my work supported me through it last year. It was the first time I've sruggled so much. I have always been push through type, but that just isn't working any more. The diagnosis I see as part of a puzzle to help with the healing process. Fingers crossed!

I came to it from burnout and leaving my job. I needed answers as to why I was falling apart. I did need to get a job again after a break from work, so figuring myself out gave me the impetus to seek a diagnosis, though I had to go private as there isn't any other option in my area. If it wasn't for that I would have probably held back from doing it too, as it is very scary having to talk about yourself. I also didn't have anyone to talk to about it with (my husband knew I was having problems but didn't know what to do and had suggested a counsellor but I didn't feel able to even do that previously).

Diagnosis was hard as most of it I hadn't talked about with anyone or maybe mentioned once to my husband at some point, though some of it he knew first hand.

If you want to do it, find your personal reason and hold on to it, as you'll need it to reassure yourself while you are waiting or questioning yourself. I started writing things down to remind myself, as it's easy to start feeling like an imposter, even after diagnosed. Perhaps it's also good to write down what you want to get out of it, as you can feel a bit lost and confused after the assessment whatever the outcome.

I respect those who choose not to get assessed, as I think if you can accept it yourself you can start the healing process without the wait, though I did go for diagnosis in the end. 

One thing to add, if you aren't sure about the history stuff, make sure you find a provider who will accept what you have. Some are strict and want an informant, but will tell you what they do accept for it, like school reports, so you'll need to do your research as you don't want to sit on a waiting list and then find out.

Good luck either way, and just try be kind to yourself.

Thank you Lotus! Means a lot to know the diagnosis isn't the be all and end all of things. I do hope for me that it gives me extra confidence to be my authentic self. Talking on here I hope will help with that too. Speaking to others with similar experiences suddenly makes you feel seen and less alone.

I don't think I have ADHD. From basic diagnistic I don't met it. I do think the interplay with both must be hard sometimes. Glad you got what you need

My therapist suggested possible ADHD to me too. I was diagnosed with ADHD first and then Autism.