Struggling to grapple with my late diagnosis.

Hi all,

First post. Please do be gentle if possible. 

I’ve struggled for the longest time. Was diagnosed aged 22, only last week in fact. 

I’m struggling because I know I won’t have what everyone else has. I won’t have a plethora of friends, or as good prospects in terms of work and relationships. Without going too in-depth, my familial relationships are non-existent; support just isn’t a thing currently. I’m trying to access private therapy but I’ve had an abysmal experience with that thus far.

I appreciate Instagram of all things isn’t indicative of reality, but I get a weird feeling in my throat and stomach because frankly, I have no one to interact with. What’s the point in even having an account?

I won’t understand societal norms, especially pertaining to womanhood. I’ve never particularly been invested in make-up, or hair care, or boys; I say this not in a, “I’m not like other girls,” way, but because it’s innately true. I couldn’t connect and so thus, this created a disconnect between myself and them. And not in a good way. 

I’m returning to education soon and frankly, I’m terrified. As much as I’d like to progress, I don’t think I can do this. I feel perpetually burnt out both being stationary, and participating in things; there’s no middle ground it seems. It doesn’t help now that no one takes it seriously. “Everyone’s a little autistic now.”

I’m just frustrated, and people in my family don’t get it. They won’t, and so I thought it might be worth confiding in a space that might. I’m tired and angry with myself, though I know this does absolutely nothing. 

Apologies for sounding controversial here, but I’m angry for having this diagnosis; these struggles that simply aren’t within my control. I can learn to interact with others in a way that might be socially acceptable, but even then it’s at the expense of my own health. I know things could be worse. 

I just needed to yell into the void. Thanks. 

  • OAP, Iain, DeSpereaux, I am impressed with your suggestions and I think you have offered some very sound advise to troubled DSM-XIV.  I can only elaborate slightly with:  Secondly, work on your personal pride to develope habits of social presentation. Try to sell yourself as though you are a product. Presentation is everything. I get you are depressed and it is very easy for someone to not realise how debilitating this condition can be which is why I have listed overcoming your depression as your first primary objective. You must somehow raise yourself out of your defeatist and depressive state you seem to be in before you can take any significant self improvement action. I understand this is easier said than done---but it must be done and we are all behind you.  

  • I definitely think that your environment is something that you could control, but you do have to take control and learn of measures of personal-control, I can appreciate that the conversation may run-dry with the neurotypical-world though. 

    I would say that you should consider PIP, EHCP, Travel Pass/s, Blue badge, any Support funds. These things require some research and the correct words and ordering, but they are all very-much awards to be taken, it feels good to secure and withhold consideration for your inequality.

    If you are going back in to education then secure support grants, ECHP, and take the resources you need to succeed. Ask the GP/s for referral to mental healths services and use each one to cycle through anxiety, depression, assertiveness, autism. You may not get the result you want each time, but you will be more competent with each insight.

    Once you are in education, go and find the student union or student engagement team, and wring your consideration pout of there budget. Learn Assistant, support worker, equipment, book budget. Take your control. Ignore the ignorant. Cement your practice and procedure and turn it towards your art..:)

  • I’ve utilised the directory to seek therapists before and honestly, even with the filters applied I’ve not found many seasoned therapists in my area; I’ll have to look for online

    Online for therapy is very much the post-covid way and one all the therapists I know have embraced. So long as you have an internet connected computer or phone and somewhere private for the session it is all you need.

    Another book that may help with making your sense of femeninity is:

    Aspergirls - empowering females with Asperger Syndrome - Rudy Simone (2012)
    ISBN 9781849058261

    All things for a better day though. Get through today knowing we are here to support and sometimes help, sometimes chat but always to have your back.

    Until then - look after yourself.

  • Hi OAP,

    Thanks so much for the video, the suggestions, and words of encouragement. 

    I’m feeling a little burnt out today so apologies for the lacklustre reply. I appreciate it sincerely.

    Many thanks.

  • Hi lain, 

    Today is unfortunately a bad mental health day. Nevertheless, I wanted to thank you—and simultaneously apologise due to the lacklustre nature of my reply—for writing this very detailed, very elaborate reply. 

    You’re absolutely right. 

    I’ve utilised the directory to seek therapists before and honestly, even with the filters applied I’ve not found many seasoned therapists in my area; I’ll have to look for online/over the phone.

    Many thanks.  

  • I’m struggling because I know I won’t have what everyone else has.

    What difference does that actially make when you look at it?

    You have what you have and the fundamentals won't change so embrace it. Wanting something you cannot have is only ever going to make you depressed anyway, so move away from that mindset and try to focus on making the most of what you do have.

    Social norms can be learned - you are clearly intelligent so make it a task to treat it like a class to teach yourself the mechanisms, expectations and responses. A book like this will help here:

    Unwritten Rules of Social Relationships Decoding Social Mysteries Through the Unique Perspectives of Autism - Grandin, Temple, Barron, Sean (2017)
    ISBN 9781941765388

    As for not being like other women - there is nothing wrong with being yourself. So long as you keep clean then being practical is perfectly acceptable and you should own the "being a character" when it comes to your dress style.

    For private therapy, can you let us know what you have tried so far please? I found my therapist on:

    https://www.psychologytoday.com/gb/counselling/england?category=autism

    Finding someone who has an understanding of autism is key and if you find they don't "gel" with you then find another. That worked for me.

    For the education struggles - make sure the educational body has a copy of your diagnosis as they are required to offer you support and it can be effective. You may also need to manage your own expectations around your social involvement but that is something to work through with your therapist.

    As for feeling angry about the diagnosis, this is pointless I'm afraid. You are no different after than before - you simply know the reasons for your struggles.

    Knowledge is power, so use this to make aspects of life better for yourself. Get support in your education, understand your limitations and accommodate the ones that cannot be changed while working to improve those that can be helped.

    Most importantly is to learn to manage anxiety as best you can - this is the energy killer. I would suggest a combination of reading about it and working with a therapist:

    Asperger Syndrome and Anxiety - A Guide to Successful Stress Management - Nick Dubin (2009)
    ISBN 9781843108955

    An Aspie's Guide to Overcoming Anxiety - Attwood, Tony, Evans, Craig R., Lesko, Anita (2015)
    eISBN 9781784501198

    I would also avoid social media as this is a toxic mix of lies, misinformation and advertising designed to make us feel worse about ourselves. I tend to only use it to follow a few special interests I have but need to time limit using this to avoid doom scrolling when using the app.

    This is a lot to take in, but there is a lot you can do to turn things to a more positive direction.

    We are here to support and help so please use us as a substitute for friends IRL if it helps you.

  • Hi...late diagnosis here as well (48) and similar family issues (zero contact or support).

    I found this video from another late diagnosee very helpful to watch https://www.youtube.com/watch?v=-nI-GZjbJ3M&t=36s&ab_channel=MatRicardo

    With friendships, be heartened that those who remain your friends are TRUE friends. I have two "best" friends who I have known since I was 11 years old. They have always known I was different, but love me anyway, and are happy to work around me. They've gradually got to know what I can and cannot do, and that if I don't stay long at an event it is nothing personal.

    Likewise for romantic relationships. I am married to a very supportive woman who also "gets me" and I am confident that it is a real and strong relationship because of this and her ability to work around my Autistic traits.

    I'm not saying life will be rosy...I have had work struggles for decades when undiagnosed as I can't do the workplace politics that makes things run smoothly for NTs. Diagnosis hasn't made it any easier either, as unfortunately my workplace is currently failing to support me, but that's in hand (make sure you join a union if you can).

    There are many fantastically successful Autistic people - finding your niche is the hard part. For me it is a job that involves a lot of routine and mostly solo working :)