Newly diagnosed and struggling

Hi maehart ,

I am 29, F, and newly in this too.

Yours is the first post that I have found on this site that really resonates with me (tbf I only started looking today), and I have to admit, the replies here are helping me too.

Having been diagnosed with Anxiety, Social Anxiety, and Depression for around 10 years now, I thought that I was finally getting to grips with things, but the new ADHD (diagnosed October) and Autism (still on diagnosis path with Right to Choose), has "knocked me for six" and I am back to really struggling with the same issues as you.  Like Number  I don't have any advice but wanted to let you know that you are not alone in this (I am only able to type this as I have had a little spurt of energy). I hope it gets better.

For PIP, I have just been told that I can apply for it too and the process is so annoying and complicated!!!! I am currently researching guides and advice to how to fill one out. I empathise with you there.

Message people when you can, and the good ones will not judge you on infrequent replies.

hello maehart, i am no expert, having only joined this community a few days ago. the amount of replies i have had to my one post have truly staggered me, and made me feel as if i am not alone. i have a few years on you. i am a 52 yo M. i am on an NHS waiting list, to be diagnosed. like you, i suffer from depression and anxiety. i always thought i was just shy, awkward and a bit flaky. then there's the oddity of wanting to be on your own, while at the same time being extremely lonely because you dont know how to let anybody in. its a lifelong frustration of mine as i am unable to connect with anyone on anything other than a superficial level. i have just been made redundant at work, which was my safe space. i want to go travelling, but i fear my senses would be overloaded. a ex-colleague of mine who has an autistic child told me last week not to be  afraid to be myself and you will be liked for who you are. its a big leap to make to let your shield down. i am unique, you are unique. be safe

Welcome to our community. Glad to have you with us. I’m also newly diagnosed, 63, and have only been using this forum for a few days. Like you, I have been struggling with depression and anxiety since adolescence and I have little contact with other people, partly due to exhaustion. I was pleased to be diagnosed autistic as it explains many of my past struggles and mistakes. Non of us, autistic or not, are free from things we regret in the past and I have been living with a dark cloud of shame for some things I have done in childhood, and also just a general feeling of not living up to other people’s expectations. I am currently working on self esteem and shame using my old CBT handouts because I am now more in touch with the ‘why’ I behave a certain way and know it is due to autism. I know it in my head but I can’t quite seem to feel it in my heart. I have many regrets over not being diagnosed as a child and wishing my parents had known so that they might have understood my behaviour. I was recommended the following book by my autism assessor and I found it affirming and really helpful. It has chapters written by autistic women followed by autism professionals’ accounts, a format which works really well. It focuses on the positives of being autistic, without denying the challenges. You might like to look at the sample ebook and see if you think it is for you.

Spectrum Women: Walking to the Beat of Autism

maehart said:

I am trying to move past the shame I have for being here and needing so much help.

We all need help at some time or another - you are welcome to ask away here and should find us a non-judgemental and accommodating bunch on the whole.

One word of warning though, many autists have unconventional approaches to communication so you may find some replies would seem odd in everyday life or some may be coloured by their own traumas or upbringing so I would recommend not necessarily taking them on face value.

Personally I found educating myself about autism to be very helpful as I could better identify which issues were caused by my autism and then research ways to cope better with them.

A decent starting point to understand the subject is the book:

Understanding Autism For Dummies - Stephen Shore, Linda G. Rastelli, Temple Grandin (2006)
ISBN 0764525476

and this site is an excellent source of discussions on dealing with the issues - try the magnifying glass on the top centre of this web page to kick off a search using keywords.

I found once I took control of some aspects I felt less helpless - it grew my confidence as I understood myself better and could identify possible approaches to coping better. Focusing on the positives helped my state of mind too and with the help of a therapist to clarify many things and deal with things I had not anticipated (processing childhood trauma that was long forgotten was surprisingly empowering) then I was able to regain almost all my "normal" adult functioning.

For reference I was diagnosed at age 54 so had a lot of accumulated stuff to process.

maehart said:

i am struggling to come to terms with being autistic and needing accommodations and support. 

Personally I found it really helpful to think of being autistic as having green eyes or fair skin - just something you are born with and sometimes have aspects that you need to allow for (avoiding too much sun for example) - it is only one aspect of my physical self.

You may or may not need accommodations and support - I found myself able to manage in situations that would have been triggering before because I understood the triggers and how to process them in a way that was safe for me. Support I am able to provide myself as I can use mindfulness to work through issues and use techniques I was trained in by my therapist.

I still use my therapist a few times as year as a mental health checkup and to consider ways to grow and develop better coping skills.

I did still go through a time of needing help and there is no shame in that - we are only human and as such are inherently fallable. It is how you deal with it when you fail that you can be judged on.

So go on, be human, find that help and make things better for yourself. How you do this is all down to you and if you like we can point you in the right direction.

Just remember we are all just randoms from the internet so be careful in taking our advice without doing your own research,

Thank you for taking time to reply. I do have a therapist, I have come on here at his suggestion. I am trying to move past the shame I have for being here and needing so much help. I have tried so hard to fit in and be 'normal' my whole life i am struggling to come to terms with being autistic and needing accommodations and support. 

I agree with Iain that it might be useful to think about what has changed since you were able to have a full life. Perhaps you had a relationship/friendship that broke down and this fuelled low self esteem? Or perhaps you just overdid it and burned yourself out, and now you need to recover.

Maybe try the things Andy suggested, and let us know how it goes. Take care of yourself.

maehart said:

I used to have a pretty full life, work full time spend my weekends with friends, go on holiday.

What has changed in your life around the time things started going downhill? You don't need to share them but reflecting on them may reveal a trauma of some kind (often an accumulation of them) that has triggered you into your current state.

From my amateur and non qualified viewpoint it sounds like anxiety is a the core symptom that is leading to many of the other behaviours, symptoms and experiences.

Have you considered speaking with your GP about this? They may be able to get you an urgent referral to see if there is anything that can help in the short and mid term for you.

I would expect a therapist would be the most effective way to deal with many of the things you are dealing with but they are not cheap - at least £50/hour for most I have seen and I would expect dozens of sessions are what are needed to get you back to a resemblance of your old life, if you find the emotional / energy cost if something you are willing to accept.

It isn't easy but you have taken the first step of sharing and asking for advice so please keep that momentum going for as long as you can and you may be surprised at the benefits that a few calls can bring.

For now please keep active here, sharing and interacting with us as it is a great way to feel connected when you are in such a dark place. There are a lot of helpful and knowledgable people here who can share advice or experiences and help you feel less alone without the overhead of actually meeting with someone.

Hello maehart.

You are not alone in the feelings that you express.....because I feel the same.....and i also share your sense of an endless creeping "crush" of those feelings, ie things are getting worse!

It seems to be OK if you feel exactly like one or other of the few powerful tribes that have built up a head of steam for themselves.....but if you feel differently, then enforced isolation seems mandated, or else you are expected to endlessly explain, justify and apologise for how you think or what matters to you.  It is exhausting and it is lonely.

So....I'm sorry that I don't have helpful links to share with you......but I thought that a very simple human  "you are NOT alone in what you feel" might just hopefully help to make you feel a little bit less isolated in your loneliness.  Times are hard for different people.....but there are plenty of us out there....somewhere...its just hard (increasingly so) to find each other and to find ourselves a safe space to support and improve how we feel.  Let's keep searching.

I wish you well.

Welcome to the community maehart 

You’re not alone with how you’re feeling, and what you’re experiencing is something many of us autistic people can relate to. It sounds like you’re in a really tough time right now, but reaching out is a big step, and it shows that you want things to get better.

It’s understandable to feel scared and exhausted when life feels like it’s shrinking, but please know that this doesn’t mean it will stay this way forever. The adjustment period after a diagnosis can be really difficult… it’s a lot to process emotionally and practically, especially when you’re also dealing with anxiety, depression, and overwhelm. It does get better though as you begin to learn more about yourself, what autism means for you, and how to manage the difficulties. 

I know when I’m struggling, it helps to focus on small, manageable steps rather than trying to fix everything at once. Even things like standing outside for a few minutes or sending a message to a friend, even just to say hello, can start to make a difference. Over time, these small steps can add up and help you feel more comfortable with yourself. Keep interacting on here too and learning from other autistic people in this forum, as it really does help. 

Applying for PIP is a great idea. it’s not an easy process, but getting the support can relieve some pressure. You might also want to consider going to your GP and asking for some counselling.  

Please don’t be too hard on yourself for where you’re at right now. You’ve been through a lot, and it’s okay to feel overwhelmed. It will get easier.