Recently diagnosed - struggling

Hello!

Thank you for the videos.

My sleep is not good, I'm not totally sure why but I put off going to sleep and I have a really bad habit of going on my phone in bed. 

I am making a request to reduce my workload which will hopefully help so I can go to work, do what I can, go home and not think about it. 

I'm not sure about anti-depressants, they're so hard to come off, I tried a few times in the past and it was awful!

I think the issue is there is no manual at the end to tell you how to do things, there is no life coach to tell what you should be or what you should do. You still have the problem of what to do with your life and how to manage.
Just like with any other test it just gives you a result, that's all.

But from the certainty, you can then plan.

Of course you are likely to re-evaluate your life and possibly realise you've made mistakes and missed opportunities, which can be painful. But that will hopefully pass.

There are various youtube vids which might help. There is probably something in here.

80 Autism Accommodations You Don't Know About (But REALLY Need)

25 Autism Accommodations You Didn't Know You Needed

Autism Starter Kit for Newly Diagnosed Adults

The key thing, which is my biggest issue, is trying to find a way to sleep well.

With work, the thing I have finally realised at 56 is not to take it quite so seriously. I have always done more than everyone else, I am not sure why, and kept myself under pressure to overperform. The stress was mostly coming from me, I just needed to reframe it.

You may be able to stop the anti-depressants. The depression is from overload or burnout, which they are not helping with. You probably will be better with a clearer head.

I've always used alcohol, in moderation, but nonetheless as a means to relax and stop the knot in my chest, I have barely drunk this year which has not been easy. I also cut caffeine right down, was none for a month, and now just one coffee now and then. Both seems to have helped.

Good luck. 

Hi,

I know it's a struggle, but that does get easier.

Myself, I'm undiagnosed and in my 50s. The seed was panted when my son was diagnosed. Some of the traits were uncannily similar. 

So, I've not had an assessment (I've joined the queue), but I'm just doing a very autistic thing. I deep dive into it, get some idea of how autism feels compared to how the so-called "normal" world operates.

The way i see it is you are "officially" autistic: a good feeling. But now, you're wondering what's next? You need strategies for coping. You got to kind of learn more about the condition in order to compare and contrast it with the neurotypical world. That way, strategies can be learned to help cope better.

All this you are expected to do on your own. There is a rising amount of people awaiting diagnosis, which shows the rising awareness of the condition. That's got to be a good thing. There is little by way of help from a governmental or charitable viewpoint, especially autistic adults. You have to seek it out or DIY, learn all you can about it. More awareness breeds more new things being learned.

I'm in the waiting area (I'm thinking Beetlejuice). You've gone through the door like Stars In Their Eyes! "Tonight Matthew, I will be Autistic!" Let the unmasking begin!

Self-education is crucial really, because you can slot the rest of the metaphorical puzzle pieces into place. Feel proud about yourself. Not to be proud of autism, but proud you made it through the hard bit. Many don't make it, due to suicides and drugs. So, be proud of getting through the long walk in the dark. There's a clearing ahead...

I'm sorry. I got caught up in "self help guru" mode 

Yeah... just get learning more about the condition, about you. Its a voyage pf discovery (it says in the brochure). And welcome to the forum! Where better to start your journey than here?

️

Hello  

I was diagnosed this year aged 35. I feel exactly the same way around people and I too have been on antidepressants for 10 years. For me, a diagnosis helped to bring clarity to the obstacles that I’ve faced in life. I’ve also found the help and advice available on this forum really helpful. 

I really hope the online community helps you to not feel alone. 

Yeah parents are mid fifties-early sixties. It is difficult because when you mention Autism many people attribute it to children. They don’t think that an adult can be diagnosed. I’ve had someone at work recently say to me and my boss “Isn’t it too late to get a diagnosis now?”. I mean that just says it all really about the lack of understanding in the wider community. It’s more of a shock when it comes from someone who works with special needs but is clearly very child centred in their thinking. Unfortunately there’s not a lot I can do about that apart from to teach them. It takes more energy and effort that way but if I want the support then I have no choice but to teach them and show them what I am going through. Again I’m lucky that my supportive boss is helping with that and when I’ve had my assessments I’m sure we can have a meeting with the staff and give them the gist without having to go into too much detail. Just a shame that’s it taken for me to have to go through all this just to understood. Suppose the positive is that it will help me to be able to process and understand the “real” me

I hope your assessment goes well, it sounds very thorough so I'm sure you will get the right outcome! 

It can be so difficult with friends who don't understand, you shouldn't need a label to say you need to step away or need time to yourself but I think having the label does help as people can't really challenge it.

I'm glad to hear your family are supportive. I'm assuming your parents are probably a similar age to mine, mine are late fifties. I think society has changed so much in their time and there's things like autism that they're just not familiar with. My mum works in a primary school so she is quite aware of neurodiversity and learning needs, I'm just not sure it's something she would apply to me. 

I'm so pleased your boss is supportive, that makes such a world of difference in work. Change is the worst, my work have thankfully stopped asking me to cover Reception if they're short because I just point blank refuse to, it causes me too much stress! 

So lovely to hear from you

My assessments start next week and will be completed by the end of the first week in June. It’s all happened quick. We have gone privately as I didn’t get much help from NHS Mental Health Team and I was not improving so we could not afford to wait years for them.

So glad to hear your partner is being very supportive of you. None of my friends have a good understanding at the moment so it is something that plays on my mind a lot. I love socialising with them but when it gets too much for me I know I need to step out. I don’t think they truly understand why I am doing it and still see me as being “anti-social”. I’d like to think that is not the case but I am too scared to say anything to them at the moment as I don’t have the diagnosis to back it up. There have been a few people who I have tried to talk to about my struggles and I’m always met with “But you don’t have a diagnosis so you can’t say that you are Autistic”. I always tell them that I wasn’t aware I needed a label to be able to explain my struggles to them. Really winds me up so hopefully the assessments go well and I can finally turn around and say “Told you so!”

It’s been a mixed bag with my colleagues. My boss is amazing and has been a rock throughout the whole process. She was the one who was able to see past everything and say that she thinks I could be autistic. Before this I never really thought about it but then I started researching and talking to my mom and it has opened our eyes and made us look at me in a different way. 

Change has always been a hard one for me. My boss is aware of this and where possible tries to avoid too much change (e.g covering lessons) and if it has to happen she will speak to me to explain. I know at work it is difficult to give notice for a lot of things but where possible she will do this.

I’ve always been a social person as this is my outlet since my job is intense sometimes. I like to do dance and theatre as this allows me to be someone else for a few hours a week and no one will judge me like I feel they do at work

Hi lovely, good luck with your assessment whenever it may be! 

Anti-depressants are very useful and I honestly cannot imagine my life without them now. 

I haven't actually told anyone that I'm autistic, only my partner knows and it has definitely helped us in terms of understanding my need for planning and routine and my anxiety when things don't go to plan. He's helping a lot of more with that as oposse to 'playing things by ear'. I don't plan on telling my family as my mum would blame herself and my Dad isn't really accepting or understanding of neurodiversity or mental health.

I haven't decided yet about telling my colleagues, I work in a close knit admin team in a GP surgery and we deal with a lot of referrals for autism and even more for ADHD and I think there are some negative views within my team and I'll be honest, those negative views have often come from myself. I always saw people's reasons for wanting an autism referral as kind of silly, because 'isn't everyone anxious with change and drained from being around people and thinks in terms of black and white and....no wait a minute, maybe everyone isn't like that and these people, like me are onto something here.' Maybe it was a form of denial, that all these people were like me so of course they can't have autism! I am actually off sick at the moment with burnout and I'm debating posting a 'hey, I'm autistic' message to our group chat before Monday. 

I will however, be telling my management team because they already treat me like I am irritating and I took some time off with stress last year which was largely triggered by a huge increase in workload and having to move to a new office, they could not understand why I was so stressed and upset by having to work in a new room and I didn't have the 'I'm autistic' understanding or reasoning to give. I will be requesting reasonable adjustments to work from home one day a week and to reduce my workload so we will see how that goes! 

I haven't really decided on telling any friends, the small handful that I do have although one of my friends is definitely neurodiverse she just hasn't been assessed. 

So, I'm kind of in a neurodiverse closet of my own making at the moment. For myself, it's changing how I am understanding and treating myself, I am trying to be gentle with myself, allow myself time to enjoy my interests without guilt and time to recharge my batteries but I'm also making an effort to be social, making friends is such a challenge for me because I mask but I am trying to make an effort to socialize more. 

You are not alone. I am 31 years old and currently going through the process of being assessed. I am struggling to find my place in society and constantly drained as well when socialising with people. It’s not something I want to stop as socialising is my chance to be able to be someone different. I do dance and drama so these allow me to be able to create a different character where I can pretend that everything is okay just for an hour or so a day.

I have recently started on anti-depressants and been on them for around 4 months now. I have found them useful however as with most things they are not going to be the “magic fix”. 

Can I just ask, now you have your diagnosis, do you feel like anything has changed in terms of understanding yourself better?, getting the right support?, being able to just be yourself without getting grief from other people?. I am aware it is very recent diagnosis but I am just curious if it has made other people look and think of you in a different light? This is something I am struggling with at work at the moment. I feel that some of my colleagues are not understanding who I am and see me as just being irritating all the time.

Would love to know how you are getting on since the diagnosis

hi illustrated.lady do search the Autism Services Directory to see if there are local support groups for adults

yes - it does seem there's more emphasis on children and parents , but hope you do find something near to you or use this group for support too !

I have no experience of what GPs can offer in terms of Therapy - there's Talking Therapy but can't say how good that is or not.

Also some good You-Tube channels I found useful and also books too - I'm currently reading "Untypical" which resonates with me

You're not alone here

Hey,

I'm recently diagnosed at 28 and feel basically the same as you. Only really understood that I've been masking all this time and it feels crazy. You're not alone with all this!

Not really about to embark on the employment tribunal route

Hello and welcome! 

As someone else has said, disclosing your diagnosis in interviews is a good way to tell which employers might discriminate or not understand, as those ones may be less likely to employ you. Which is illegal, and you wouldn't know it was that or something else because they wouldn't outright say that. 

But, some employers will have on their website if they're an autism/neurodivergent friendly employer. You can also look at Glassdoor reviews to see if anyone has said anything negative about stuff like that. And also if the environment is right for you. 

I told my employer from the start about my ADHD, and since being diagnosed as autistic I've told them that too. I'm quite lucky in that we have quite a lot of neurodivergent staff, and my employer is understanding and good with reasonable adjustments if you need them. 

If you ever do need paid for adjustments at work that your employer can't give you, Access to Work is a governmental offer that you can apply for (when you're employed).

Aa for supporting yourself, Ive found compassion-focused techniques really helpful for self acceptance. There's some decent workbooks and information about it online, if you're interested. 

 I also found it helpful to analyse any beliefs I had/have about autism and disability in general, as that can affect how we process the diagnosis (our society is intrinsically ableist and we unfortunately internalise some of that, which can cause us to feel shame - happens to the best of us!)

Most importantly though, give yourself time. It's a process rather than a final destination. Be kind to yourself

Oof I’m sorry to hear about what happened when you disclosed to your employer. Thirty years, wow. I hope your position has improved since then.

Hello and welcome to the 'Latelings' club.

I was diagnosed in my fifties and had masked all my life trying to fit in. It has been difficult trying to peel back the layers of masking until I can no longer tell what is mask and what is me.

This is only the start of your autism life so remember to be kind to yourself as you are not broken but only different.

Disclosing to an employer is risk only you can decide on. In my case it did not go well. My manager has used it as an excuse to move me out of my field of work after 30 years based on bias and ableist stereotypical views. However not all are like that.

Thank you for your kind words! 

I have been masking a lot, I'm more comfortable with my colleagues I share an office with but with everyone else I want as little communication as possible because I can't be myself. 

I would love to find an autism friendly job but I don't even know where to start. I used to care for elderly people which I adored but couldn't cope with the awful people I worked with sadly. 

Hello! 33 here, diagnosed at 30 with Autism.

One thing that has helped me in the past couple months is having a job that is “autism-friendly.” When I worked at my previous jobs I masked really hard to try and seem professional and “normal,” but now I have a job where I feel comfortable disclosing my diagnosis without fearing there being a stigma against me. That has reduced a lot of stress for me. I can tell a client that I want to have our meeting in another room because of a bright light or loud noise without feeling like a burden.

As to HOW to find a job that is autism-friendly? I’m still figuring that out. I kind of cheated by choosing an occupation where I work directly with disabled adults. Maybe in interviews it might help to disclose your Autism to test the waters and see how the interviewers react? I know disclosing your diagnosis with employers can be daunting and there are mixed opinions in the community about that, but in my experience it has helped.

Hopefully that helps and I wish you the best!

Hello!

Oh my gosh, not insensitive at all, I felt the same way when I got the diagnosis, it was like a weight had been lifted. I think reading the report has made it feel more real and a bit of a reality check I suppose. 

I'm really pleased that you got your diagnosis. I can imagine than autism was very unknown when you were younger!

Hi and welcome to the community