Bit of a ramble following another shutdown...

I know that if I had had suppprt in my previous jobs, I would most likely still be working there now. You are entitled to support, by law. We might not always know what support we need, when we first start thinking about this but having the opportunity to sit down with someone from the company, who could help you work out what support would be most helpful to you, would be a start. You might be high functioning but that’s not an excuse for employers to not give you suppprt. 

It might be helpful for you to speak to an independent advocate or someone from a disability group. You are entitled, by law, to be provided with access to an independent advocate and they will at least help you get more clarity around the situation.

It seems that many of us are in danger of being made homeless. I’m currently on a suspended repossession order and managing my money as best I can while I’m out of work. 

Don’t be hard on yourself, you don’t need that, you need to be kind to yourself. You’re doing the very best you can under extremely difficult circumstances. There are people out there who can help you. You can contact your local social services and ask for the number of a local independent advocacy service or ask for a referral or you can google it. Disability rights groups are very helpful. You deserve help and support as much as anyone and the risks of not getting the support can be dire. And don’t let anyone tell you you’re high functioning, it’s a confusing term that is really only meant to be for the benefit of the health professionals. Take good care of yourself. 

I know that if I had had suppprt in my previous jobs, I would most likely still be working there now. You are entitled to support, by law. We might not always know what support we need, when we first start thinking about this but having the opportunity to sit down with someone from the company, who could help you work out what support would be most helpful to you, would be a start. You might be high functioning but that’s not an excuse for employers to not give you suppprt. 

Thanks Former Member

I have had two meetings with Occupational Health, which was arranged by my employer.  The second meeting confirmed that they had advised my employer of what they needed to do, but have failed to implement anything.  They also stated that they are not obliged to cater for cater for sensory issues as my diagnosis said I have sensitivities to noise (light wasn't included for some reason), but it didn't specifically state sensory processing disorder and they need this to be clarified by a professional.  I still haven't seen the report following that second meeting.

The office that I work in is continually changing and there will be a big move round in the coming weeks, where I will be moved to a new desk in the main office.  The new layout means there are no quiet places to work anymore and although they are moving my position in the office, it doesn't actually change anything.  The idea originally was to place me somewhere that may be a bit quieter, but that is no longer possible due to the amount of people that are being crammed into one office.

Occupational Health also asked me what they thought they could do to help and this did catch me off guard as I am still trying to figure things out for myself.  I stated somewhere quiet to work when everything gets too noisy or busy would be helpful, as well as forewarning where possible on changes to my work environment or projects I am working on. I think my employers still think that having a diagnosis of ASD means you will have some treatment and then you will be cured and you can crack on as normal.  They don't seem to recognise that this isn't going away.

It might be helpful for you to speak to an independent advocate or someone from a disability group. You are entitled, by law, to be provided with access to an independent advocate and they will at least help you get more clarity around the situation.

I guess up until now I have never considered myself disabled (struggling continuously yes, and I am have come some croppers as a result), so have never though that I qualify for any help or access to support from disability groups.  I have struggled with the issues all my life, but have only had my diagnosis for a year and previous to that I have been fobbed off by doctors and fed various pills, whilst being told to pull myself together and get on with it.  So to summarise I have been told for most of my life to get a grip and move on.  Although I know I am not coping and need help, to actually acknowledge that I qualify for it after being told for so long that I don't, is difficult.

It seems that many of us are in danger of being made homeless. I’m currently on a suspended repossession order and managing my money as best I can while I’m out of work. 

It's a horrible situation to have to go through and I wouldn't wish it on anyone.  I didn't know how to ask for help when I got myself into similar difficulties in my younger years, but it sounds like you have at least taken the first step.  For me my home is everything as it's the one thing I have control of and can manage to my needs.  I now know that when you are in difficulties, informing the bank as soon as possible to put measures in place is key to stop things getting out of hand.  I hope the situation improves for you soon.

Don’t be hard on yourself, you don’t need that, you need to be kind to yourself. You’re doing the very best you can under extremely difficult circumstances. There are people out there who can help you. You can contact your local social services and ask for the number of a local independent advocacy service or ask for a referral or you can google it. Disability rights groups are very helpful. You deserve help and support as much as anyone and the risks of not getting the support can be dire. And don’t let anyone tell you you’re high functioning, it’s a confusing term that is really only meant to be for the benefit of the health professionals. Take good care of yourself. 

Again, thank you for your support.  At the moment, feeling isolated and not being able to explain to anyone how I feel or what I'm going through makes it more frustrating and like I am letting everyone down.  I will take your advice on independent advocacy and disability groups as like I mentioned above, I never thought I qualified for them.  The hardest challenge is trying to explain to people that some days I can hold it together and other days I am constantly falling apart.  People use the good days as a benchmark and wonder why you fail to pull it together when you are struggling to hit that benchmark repeatedly.  

I know that if I had had suppprt in my previous jobs, I would most likely still be working there now. You are entitled to support, by law. We might not always know what support we need, when we first start thinking about this but having the opportunity to sit down with someone from the company, who could help you work out what support would be most helpful to you, would be a start. You might be high functioning but that’s not an excuse for employers to not give you suppprt. 

Thanks Former Member

I have had two meetings with Occupational Health, which was arranged by my employer.  The second meeting confirmed that they had advised my employer of what they needed to do, but have failed to implement anything.  They also stated that they are not obliged to cater for cater for sensory issues as my diagnosis said I have sensitivities to noise (light wasn't included for some reason), but it didn't specifically state sensory processing disorder and they need this to be clarified by a professional.  I still haven't seen the report following that second meeting.

The office that I work in is continually changing and there will be a big move round in the coming weeks, where I will be moved to a new desk in the main office.  The new layout means there are no quiet places to work anymore and although they are moving my position in the office, it doesn't actually change anything.  The idea originally was to place me somewhere that may be a bit quieter, but that is no longer possible due to the amount of people that are being crammed into one office.

Occupational Health also asked me what they thought they could do to help and this did catch me off guard as I am still trying to figure things out for myself.  I stated somewhere quiet to work when everything gets too noisy or busy would be helpful, as well as forewarning where possible on changes to my work environment or projects I am working on. I think my employers still think that having a diagnosis of ASD means you will have some treatment and then you will be cured and you can crack on as normal.  They don't seem to recognise that this isn't going away.

It might be helpful for you to speak to an independent advocate or someone from a disability group. You are entitled, by law, to be provided with access to an independent advocate and they will at least help you get more clarity around the situation.

I guess up until now I have never considered myself disabled (struggling continuously yes, and I am have come some croppers as a result), so have never though that I qualify for any help or access to support from disability groups.  I have struggled with the issues all my life, but have only had my diagnosis for a year and previous to that I have been fobbed off by doctors and fed various pills, whilst being told to pull myself together and get on with it.  So to summarise I have been told for most of my life to get a grip and move on.  Although I know I am not coping and need help, to actually acknowledge that I qualify for it after being told for so long that I don't, is difficult.

It seems that many of us are in danger of being made homeless. I’m currently on a suspended repossession order and managing my money as best I can while I’m out of work. 

It's a horrible situation to have to go through and I wouldn't wish it on anyone.  I didn't know how to ask for help when I got myself into similar difficulties in my younger years, but it sounds like you have at least taken the first step.  For me my home is everything as it's the one thing I have control of and can manage to my needs.  I now know that when you are in difficulties, informing the bank as soon as possible to put measures in place is key to stop things getting out of hand.  I hope the situation improves for you soon.

Don’t be hard on yourself, you don’t need that, you need to be kind to yourself. You’re doing the very best you can under extremely difficult circumstances. There are people out there who can help you. You can contact your local social services and ask for the number of a local independent advocacy service or ask for a referral or you can google it. Disability rights groups are very helpful. You deserve help and support as much as anyone and the risks of not getting the support can be dire. And don’t let anyone tell you you’re high functioning, it’s a confusing term that is really only meant to be for the benefit of the health professionals. Take good care of yourself. 

Again, thank you for your support.  At the moment, feeling isolated and not being able to explain to anyone how I feel or what I'm going through makes it more frustrating and like I am letting everyone down.  I will take your advice on independent advocacy and disability groups as like I mentioned above, I never thought I qualified for them.  The hardest challenge is trying to explain to people that some days I can hold it together and other days I am constantly falling apart.  People use the good days as a benchmark and wonder why you fail to pull it together when you are struggling to hit that benchmark repeatedly.  

I totally identify with everything you said Starbuck. I’m 50 and only just getting the help I need. If you told me even a couple of years ago that I would be getting help from a disability group or the local social services, where I worked as a social worker, I would have thought you were mad. 

I have never thought of myself as disabled, and we’re not, but we are in terms of society and we are certainly deserving of help and support so we have to kind of get into that mindset, to some degree, in order to get the help we need. 

A common trait of autism is that we have great difficulty in asking for help. And as for your sensitive to light not being documented, that’s bullshit. I was only diagnosed in October and since then, I have learned way more about my struggles, that weren’t even mentioned in the diagnostic report. For example, avoidance is huge for me and I’m starting to notice when it’s worse, what triggers it and what helps etc. The new care acts, which trumps the equality act in many ways, states that people no longer even need a diagnosis, but instead just have to show how they are affected. The disability rights groups or advocates will help you make sense of the situation and inform you of your legal rights etc. You will feel less alone with it, which is in itself priceless. 

When I first called the disability group, out of sheer desperation, I thought I was going to lose my home and I know that you understand what that means, I got so much out of that call. The woman on the end of the phone understood me completely and gave me confidence that I was entitled to support and that’s when I started to think of myself as disabled, in relation to the social model of disability. 

I can honestly tell you that the laws can be used to benefit both parties, the local authorities and the individuals and I always used it to help my clients so I knew I could use it to help me. It was only 5 weeks after getting my diagnosis that I got the help I’m now getting. It’s not perfect but I feel supported. I no longer feel alone and it’s actually creating a purpose in me, to work for and help others in this situation. My business ideas and my whole outlook on life is changing, since I began to admit and accept that according to the social model of disability, I am disabled and therefore protected in law. And the autism act states that we must not only be accepted but celebrated, and I’m going to hold them up to that. You’re not alone. I identify with you completely.