Adult with Aspergers.... Struggling — Scope | Disability forum
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Adult with Aspergers.... Struggling

Aspie35 Community member Posts: 2 Listener
This will get pretty (Very) long but bear with me, it's quite complex. Maybe many will recognise a lot of what I put. 

The problem for me is a combination of misdiagnosis, circumstances and peoples actions towards me.

The NHS have consistently ruined my life with misdiagnosis and a lack of understanding. I was wrongly diagnosed as having anxiety which I never agreed with. I would explain the symptoms and how different they are to anxiety but would be constantly disregarded with them insisting it's anxiety and that's that.

I have done absolutely everything possible for treatment of "anxiety" ranging from behavioural therapy, meditation, exercise and breathing exercises to medication, CBT and Counselling. None of it has worked whatsoever though. They just keep pushing me through the same treatments over an over again though because to them, it's like they have an obsession where the treatment for anxiety will 100% work for me and I just need to keep doing it. I've told them about it not working, but I'm then accused of making excuses and not trying hard enough. 

I've always been confused with being labelled as having "anxiety". It's completely different to what I'm going through. I did a lot of my own research wanting to get to the bottom of it for once and for all.

As it happened, while communicating a lot on mental health forums, many members would tell me what I'm describing sounds exactly like Aspergers. I did extensive research into it, contacting charities, speaking to people direct who have been formally diagnosed with it and joining Aspergers forums. I've even done the AQ test (Where I scored very high on). It seemed absolutely certain that what I'm going through is without a doubt Aspergers.

The problem I have living with Aspergers is a lack of both support (my family are dead) and resources to manage on a daily basis. I can understand my limits and what things cause me more distress than others, but several pieces of the jigsaw are missing in my life which would otherwise allow me to live life the best I can.

On one hand I live a life of misery. I struggle integrating with people. I can't do any hobbies or things I would be interested in doing (because either it's not available to me or I don't drive and would have to travel too far to get there, which causes me massive distress and I end up being burnt out and feeling really low). On the other, people force even more pressure on me, which I just can't handle. 

I've had situations arise where I've had no support for, which, had the NHS listened to me about the Aspergers, I would have had extra resources to manage. 

For example, once when I was trying to get into a routine of walking my dog, he was attacked by another dog. The owner turned their back and walked off. I got home and just couldn't leave my house due to being in shock. He badly needed the vets as well. Had it been recognised that I do need a bit more support, then I could have at least had someone to phone to have a bit of help with that situation.

Another time I had neighbours from hell move in next to me. For almost 3 years previous to that I'd been desperate to move to another area where there is more relevant support for Aspergers, but the NHS wouldn't support this move because the GP's I had seen refused to accept I have Aspergers at all. I suffered significant abuse from these neighbours and ended up very low to a point I wouldn't leave my house at all anymore.

In the end I gave up my tenancy to get away from there. 

As it happens, it had to get to a point of me being suicidal about it all to by a bit of luck speak to a GP who himself has Aspergers. He completely recognised what I was saying was Aspergers and as he was so certain, he managed to secure funding for me to get a diagnosis (something I have had no contact from the NHS about since).

So now... Here I am. Living in an area with nothing whatsoever. I can't do any hobbies I would enjoy because there's nothing available here full stop. So I just manage life just about existing. As I'm so miserable and just have nothing to balance it out with, I just can't take anymore. 

There's where a huge problem is though, I can't take or deal with anymore and yet people force too much on me which pushes me that one step too far over the edge, and I can't cope anymore. 

I opened a complaint with the Royal Mail after a delivery driver damaged my property and parcels by lobbing them in the front door. I had full evidence of this, so it should have been a straight forward complaint. They kept twisting everything I said in emails, clearly trying to get out of it. I didn't have it in me to continue to I just left it by not replying to them again.

Because of this lack of balance in life, I constantly have that on edge feeling as I've mentioned. It's like living very miserably with no way out, then it just takes 1 more thing to exceed what I can deal with and I either have to just stop with it or I end up just feeling so exhausted and that's when I feel I just can't go on in life anymore.

Things would be so different if I just had a way to take the rough with the smooth either side of difficult times. 

So for example with it. The Aspergers really limits me. This is partly because of the Aspergers itself and the tendency to be totally overwhelmed and burnt out when going out and about, but when combining that with no NHS help and also circumstances of where I live (nothing within travelling distance I can manage without huge distress) is what makes my life miserable.

Then, I take on or I'm pushed to taking on things that are stressful and difficult for anyone, weather it's because of the nature of it or because of people making things much harder for me (see the Royal Mail example). When I'm already miserable, with nothing to look forward to or enjoy and I've got nothing to enjoy as a treat for having a "tough day" with these things, I just cant manage.

If the move I've been so desperate for had taken place, this would have opened the doorway for being able to get some enjoyment in my life again which I can manage without distress. A quick walk 5 minutes to a coffee shop, then to place the order and sit and enjoy it is a huge difference to where I am now with having to travel almost an hour to get into town, then get to the coffee shop and then repeat the journey back home (A round trip of over 2 hours) which way before I can even get back home, I'm simply too burnt out, low and overwhelmed. 

Achievable activities like the coffee shop (if I lived closer to one) are the sort of activities which if done often enough can improve my mental health and stop me feeling so miserable in life, therefore when other challenges happen in life, I can face them and deal with them without being completely bogged down. Or I've at least got that option to offset a tough day.

It's these things that the NHS don't understand. I'm in no doubt that this is because these little "pick me up's" in life are taken for granted by those staff members and so they don't see how it can be a significant positive in someones life. 

They either don't see my life as a whole, such as family deaths that have happened, the struggles Aspergers causes, the struggles integrating with others, or because of the incorrect diagnosis of "Anxiety", believe that if can talk about managing a coffee shop 5 or 10 minutes away, then the "Anxiety" isn't that bad are therefore theres no reason why I can't manage going to one an hour away.

The big difference of course is it's Aspergers, not Anxiety. The noises, the fast pace, the feeling of being on a completely alien planet pushes people with Aspergers closer to a burnout. So there's a massive difference between experiencing that for 10 minutes or experiencing it for an hour. 

It's very difficult not having the NHS recognise my Aspergers. The big problem it seems is you have to go through mental health teams when Aspergers isn't a mental illness.

It means that when I encounter staff who understand Aspergers and can recognise it in me, they more often than not have no power whatsoever in getting me anymore help or more resources. Yet when I get referred to a team who can allocate extra support or resources, they usually have no understanding of Aspergers and therefore just see me as high functioning and assume that I'm perfectly fine.

It's entirely possible to be high functioning and still struggle significantly. When I last reached a boiling point and was taken to hospital to see a mental health team. They refused to accept I have Aspergers. I don't even think they knew what Aspergers is, they just have a broad idea of what general Autism is and as I didn't fit into that category, then I can't have Aspergers.... It even states online on an Aspergers/Autism website:

"What distinguishes Asperger's Disorder from classic autism are its less severe symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected, and they frequently have good language and cognitive skills.".


  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @Aspie35

    Welcome to the community, thank you for speaking so honestly about what you've been through and how you feel, I'm sorry about what you've had to go through, it doesn't sound easy at all.

    I have sent you an email from [email protected], it would be great if you could give it a read and get back to us :) 

    Meanwhile, I'm sure other members will have useful advice for you. Again, wishing you a warm welcome :) 
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  • Aspie35
    Aspie35 Community member Posts: 2 Listener
    Thanks very much. I will have a look at that email now. 

    I think naturally a post ends up long when I post something as there's a lot to it and I hope others can relate to feel they aren't alone. As I've spoken to many people across various forums, FB groups and so on and the pattern with adults is always typical.... Misdiagnosed as having anxiety for many years, knowing there's more to it than anxiety, then after many years by pure luck being seen by someone with knowledge of Aspergers/Autism and being put on the path to diagnosis.

  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,488 Disability Gamechanger
    Your post wasn't too long at all @Aspie35 :) And you're right that many people do unfortunately experience misdiagnosis, and end up being diagnosed later on in life. Please do take a look at Ross' email, and let us know if there's anything we can do to help. 
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  • [Deleted User]
    [Deleted User] Posts: 1,651 Connected
    I've been Aspie all my life probably, but I wasn't diagnosed till October 1999 at the age of 23 and half, in fact I remember the day they had me in for an MRI, 23rd of October 1999, and they "lost" the flipping results so I ended up having to have another one.


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