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Non existant support

stratman Member Posts: 4 Listener
edited December 2020 in Autism and neurodiversity
I will try to make this as short as I can.

Nearly 3 years ago (Jan 2018) at the age of 55 I was diagnosed with ASD (potentially vulnerable, learning difficulties, communication difficulties etc).

I was "Assessed" by a "health and social care" company (2018) and had a letter confirming I am on the waiting list for a support worker (mid 2018) and during the "assessment" I was told by one of the chaps he didnt see ASD as a disability, the other one said he will rush my assessment through because he could see I need help asap (his words).
I then heard nothing for a couple of years and I eventually contacted them  (mid 2020) and they had never heard of me, I was told they would look into it and get back to me within a week (didnt happen).

I went to see my GP after the diagnosis (2018) as instructed by my GP if I got a positive diagnosis, the doctor told me to just
"get on with it", "everyone struggles" and "do what I have done for the previous 55 years" I have not been back and stopped collecting all medications (diabetes, blood pressure, cholesterol and preventative medications because of my family history).
To this day I have had no contact and none of this has been questioned.

I contacted social services for help (2017), was hung up on first time, phoned them back, they took my details and I never heard back.
Contacted them again (2020), was "assessed" and the report was not factually correct.
The upshot of the "assessment" was I have to wait for a support worker from the other "health and social care" company..

I eventually emailed one of the people who was part of the diagnosis team (early to mid 2020), she put me onto a specialist adult autism team who sent me a form, I filled it in, sent it back, was told they accept my referral and to this day nothing.

I wont even start with the "benefits" agencies.

I have tried to explain to all of the above but either I am not explaining well enough (communication issues as diagnosed), they are not listening, they dont know what they are doing, they think they know better than a consultant pstchiatrist (and me) or they are blatantly denying me help because they know I can do nothing about it (personally I think its a mixture of them all).

The "assessments" by the social services and the other "health and social care" company contradict the diagnostic report done by a consultant psychiatrist and I know for a fact she is right, I live it.

What I see is I need support to get support (you get the idea Im sure) so Im still in limbo as I am sure many others are.

I am starting to see this as discrimination, ablism, disablism etc but I cant work it out either way and I was hoping a discussion on this topic would help me see some sense in it as it is not a pleasant position to be in to put it mildly.


  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    edited December 2020
    Hello @stratman and welcome to our community.  I'm sorry it's under these circumstances that you have found us but I hope we can help.

    The delays you have experienced from diagnosis to social care assessment are really poor, and the attitude of your GP is shocking in my opinion.  In-fact, it might be worth changing GPs to have someone more proactive and understanding in your corner.  Would this be something you'd consider?

    I understand how frustrating it is having to do all the pushing, but also maybe give the specialist adult autism team a call to ask if their is a backlog and when you can expect to receive an update.  

    Other useful services are the National Autistic Society who have a helpline that you can call for advice.  For more information visit their autism helpline webpage.   While, the NHS website has a list of places to get support if you have autism that could flag up a resource you haven't yet considered.  

    I think there's a perfect storm of barriers you are facing to accessing support that includes over-stretched social care services, coronavirus staff shortages, reduced local authority budgets, a lack of autism awareness and the presumption people can just 'get by' without support.  It's unfair for you as the person affected though :( 

    Please let us know how you get on and I hope it's not long before you have some progress.
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  • stratman
    stratman Member Posts: 4 Listener
    Hi Cher_Scope

    Thank you for your kind response and suggestions.

    I think you have highlighted the problems and the fact that you have been so understanding is very helpful and I thank you.

    I will see if I can find someone to help me contact the autism team again but as far as the GP goes I have lost trust in them (its not my first bad experience in fact I cant actually think of a positive one and to be fair they dont have the time to work out what Im trying to say) and the NAS and NHS have nothing where I live.

    I have recently been advised that contacting my MP and/or considering an official complaint/legal action  would be viable options which if I can find someone to help I will consider if I get no success from contacting the autism team again.

    It all comes back to needing support to get support and Im sure there are lots of people in a similar situation.

    When you mentioned the lack of awareness and the presumptions you hit the nail on the head and the few people who have seen my diagnosis report and know how I exist were mortified that I am being treated this way (as am I) and also the fact that I clearly cant look after myself has left me with limited options so you have been most helpful and I thank you again.
  • poppy123456
    poppy123456 Member Posts: 25,770 Disability Gamechanger

    Funding for support from local councils has decreased drastically over the years and it's not easy to get any support for anything. There are some people though that have ASD that manage very well and need very little, if any support and i'm not saying you're one of them, so please do think that.

    My daughter was also late being diagnosed, although not as late as yourself by any means. She was 17 and up until Covid, she had a fair amount of support, which was fully paid for by our local council. Sadly since Covid this support has decreased to a big fat zero. Her PA quit with no notice at all, so the 8 hours per week she had has now gone. She loves the cinema, which was obviously taken away due to Covid. She's unable to go out alone and relies heavily on myself and with a disability myself, it's definitely not easy to support her.

    I see that you have been assessed by social services, so that's a good start. Although i can see you're still waiting for that support worker and during these most difficult times that isn't going to be easy. My advice is to keep on ringing your social services, don't give up and they will hopefully eventually speak to you. I know Covid shouldn't be any excuse for delays but sadly it is.

    You mention the "benefit agency" please may i ask what you mean by this? Have you tried claiming a benefit and were refused? Are you asking for help in trying to claim a certain benefit? If you can give some more details i'll do my best to advise you further on this. I have extensive benefit knowledge and i'm here on the community to help others like yourself in any way i can.

  • stratman
    stratman Member Posts: 4 Listener
    Hi poppy123456

    Thank you for your response.

    Im afraid Im not one that manages well, I dont want to go into details as this is not the place.

    I do understand that since covid has hit things have got worse and maybe its my way of thinking but Im also looking at the 2 years prior since my diagnosis.

    I think its terrible your daughter losing her support as have many others and its wrong, its hard enough as it is as you rightly pointed out with the covid restrictions but to remove the support is disgusting and it makes it even worse with you also having a disability and I can see no excuses.

    I understand your daughter going out on her own must be difficult and I get it 100% it can be a huge challenge, I go out I would say twice a month to get shopping and Im not always successful, I generally eat a maximum of 5 meals a week in fact as I am writing this I have not eaten for 3 days, Im not moaning as I just have to deal with it and covid has just made it harder. As I have no support I have 2 choices.

    I didnt explain well about my "assessments" (which is not unusual for me). The social services "assessed" me and the result was I have to wait for a support worker from the other company who didnt even know who I was after a referral, an "assessment", a letter stating I am on the waiting list for a support worker and when I called them 2 years after to chase it up they told me they didnt know who I was, they told me they would find out what was going on and phone me back within a week and never did. So basically as far as the social services go they have said they are doing nothing more and the other company clearly are not going to do anything if that makes sense.

    As far as the benefits go, again Im not complaining because I am more fortunate than a lot of people in the respect that I get something.
    As one very small example in the pip "assessment" it says I have no communication problems (written or verbal) at all, my diagnosis report says different and as far as I am aware I didnt think an autism diagnosis was possible unless there was a problem with communication and if I am wrong it could be because I have communication problems :). This doesnt even scratch the surface I can assure you, based on their "assessment I could not have an autism diagnosis because I wouldnt meet the criteria. I also got a 3 year award on a lifelong disability.

    I thank you for your offer of help but you have more than enough on your plate (and I really hope your daughter gets her support back). Whereas I know Im not getting what I should be I have enough to survive and the fact I dont go out of the house or eat often helps. My next "assessment" is in 2 years (assuming the goal posts are not changed) and I have to just get by on a daily basis.
  • poppy123456
    poppy123456 Member Posts: 25,770 Disability Gamechanger
    Thank you for your reply and for the kind words too.

    I agree that sometimes and internet forum isn't the place to discuess personal issues. I'm a very private person and usually keep my problems to myself.

    I note though that you said that you're waiting for a "company" to get back to you, or you were waiting. When my daugher first got a needs assessment we had 2 choices, we could either ask a support company to send a PA to us or i could employ one myself. I chose the latter option because i didn't want a different person coming to my house each time. My daughter doesn't like change and she doesn't interact well with family, let alone people she doesn't know.

    I decided employing a PA would be the best option. It did work out well for 2 years but sadly after the first lockdown her PA decided she didn't want to continue to work supporting her and left, with even saying a single word. 2 years of trust that my daughter had for her was lost. We were heartbroken.

    Maybe this is an option you could consider? I would assume that after the assessment you had then you are indeed entitled to some support.

    Your PIP award, yes 3 years for a life long condition isn't long at all. My daughter started claiming PIP in August 2017 and since then she's had 1 review. Her first award was for just 1 year and her second award was also for 1 year. Although it has been extended due to Covid. Totally and utterly insane! She hasn't been out in 20 years alone, she can't tell the time, she can't add her own money, she can't sort her own bills, she needs assistance in the kitchen, assistance to dress but of course a change could happen in the near future, despite having been awarded Enhanced for both parts twice. Crazy!

    I really do hope that you get the support you clearly need. Good luck!!
  • stratman
    stratman Member Posts: 4 Listener

    In regard to what you say about assessments my diagnosis report has recommendations, I have had 2 "assessments" since, neither have addressed the recommendations, both "assessments" agree I need support, the social services "assessment" said I have to wait for a support worker from the other "social care" company, therefore the social services are doing nothing, the other "social care" company who I have been "assessed" by (and had a letter stating I am on the list for a support worker) dont even know who I am so they are not doing anything either.

    So the options you put forward are not options for me, I do not get the benefits Im entitled to and can barely pay my bills and as the support is not happening and I need support to get support I am left to rot.

    I know its hard to believe but they are the facts and I have the proof.

    The only potential help now is a new thing set up for autistic adults which I self referred to, they agree I need help but again I have been waiting for nearly a year for a needs assessment and from past experience I am far from hopeful.

    I appreciate what you have said and you have helped a lot, I now know how bad the system is all round therefore I now know I only have one option.

    Good luck and I hope things improve with the support for your daughter.

  • Ross_Scope
    Ross_Scope Posts: 5,790

    Scope community team

    Hi @stratman

    I'm sorry to hear about your current situation, and I hope the advice offered by Poppy has been of use to you.

    I hope you get somewhere with the new service for autistic adults, that sounds like it could be very helpful for you. Just to check, have you been eating much recently? you mentioned in a previous post that you had gone three days without eating anything, and that is concerning.

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