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Advice on disclosing diagnosis

AG2026

I an new. I hope it is ok to launch right in with questions as don’t know where to turn.

I am in difficult care situation with my elderly mother and that is bringing me into contact with social services and care industry. Long story, not good.

At same time I had autism confirmed early this year. Late in life. Female. 50s. I have known for a long time. Waited years for process locally. At the time I did not really register and no follow up locally. I find comfort from advice online and yellow lady bugs postings in Melbourne and my own reading.

Last week I got sick of social workers and their emails starting “ thank you for your very detailed and long email” and I fired back that I was autistic and we believed in detail.

At same time I was referred to mental health home treatment team for care burn out. When I have also told them I have had dismissive comments

- it is just a label

- maybe you can be helped to learn how to communicate better with social workers- not vice versa

- maybe you need to find an open mind- that one really hurt. 

They also keep “ sign-posting” me to do things as though they don’t know what burn out and overwhelm mean. Anyone who uses word signposting causes me to switch off. It is a trope for “ don’t expect me to do anything myself”.

The care system is brutal. I already feel gaslighted by almost everyone I meet and yet all external factors are ignored and it all becomes my fault. I feel disclosing my autism has just led to more of that “ it’s her”. I feel I violated myself without any understanding. My father was autistic and he died last year. I miss being with someone like me. Just that resonance of being with him. I have also been forced into a short dbt course I find truly unhelpful in trauma and autism. It tells me to radically accept high level trauma and even verbal abuse from social workers. My mother is now on SW 25 as they change and fail so much.

I’m not sure what I am asking, but I regret disclosing the diagnosis to a brutal service failing a family  and it seems to then force even more masking and withdrawal because of the responses. I am not ashamed of autism or who I am. I am though terrified at lack of understanding even in mental health teams. The come back has been to see autism as a deficiency or deficit to be altered or managed. I have been shocked really.  I still have to negotiate care for my mother. I feel my mind is being constantly scrambled by other people to extent I want to isolate even more. 

I guess I don’t know how to protect and make a diagnosis helpful when local services fail or are non-existent. Thanks for any thoughts. I just feel vulnerable and separate and scared.

  • This is disgusting. Personally I would write a letter of complaint.

  • Hi and welcome to the community.

    I'm really sorry to hear how you're feeling. 

    I'm not personally familiar with how the situation might differ, in Australia, in respect of things like disability rights and social care. But I wonder whether any of these resources might be helpful. And also whether - from a practical perspective - they, or a local autism charity, could provide you with some helpful support and signposting:

    Autism Association of Australia - Autism and your rights

    Amaze - Autism Connect - National autism helpline

    Carers Australia - My Aged Care

  • I spent ten years in England dealing with Social Services and the NHS on behalf of my father, before he died. It is brutal. They dump everything on the relatives. I've been rung two days into a holiday to sort things out for the Social. Once, the local hospital said he'd be in there for another week and the next day they rang me to get him out because they needed the bed. I said his house was cold and I was at work, 50 miles away, and the nurse said "Well, it's your problem if he spends the rest of the day in the waiting room." That was pre-Covid, when the pressures were slightly less.

    They will ignore you as long as they can because it's inconvenient for them to change. I suggest you request an urgent carer's assessment. It may not help a lot (although one person I know gained some spa days) but it gets it on record and you tell teh assessor you're autistic, as it will go into their report and be on record somewhere. 
    carers.org/.../carers-assessment

    Do push your rights as a disabled person (legal category in equality law) not to be discriminated against by being gaslit.
    www.equalityhumanrights.com/.../disability-discrimination

    I also found the support here - especially about your rights - invaluable. You can pick your country (although, amusingly, the English site is called "UK").
    www.carersuk.org/.../

  • Can you request an asd friendly social worker and/or speak to someone at a higher level about your concerns/their discriminatory comments? Maybe even just a different case worker might help, unless those comments have come from a range of them. In the UK id perhaps also suggest writing to your local MP, not that it would do anything other than provide a log of concerns. 

    As for signposting I've come to accept it as professionals covering their own backs while offering nothing. Passing the buck. It's frustrating - that time when I was referred to counselling services after I was told I couldn't possibly have  the totally unrelated medical condition that I in fact do have (and now have a diagnosis and medical support for)... It's frustrating to have to hold firm and keep pushing back but I'm my experience sadly you have to. 

    Good luck. 

  • I do not know how you feel about 'wielding the big stick'. Autism is considered a protected characteristic under the Equality Act 2010 in the UK, which means autistic individuals are protected from discrimination in various areas, which include access to public services, including social services. This means in effect that if your autism is interfering with your effective access to care services it is up to them to make accommodations so that you are not discriminated against. From what you have said it seems that the opposite has been happening. The central idea behind the legislation is that service providers have make certain that you have a level of service that is the same as a non-autistic person would get, by adapting their approach to take account your autism characteristics. Ideally this should nullify any outcomes that are less favourable than a non-disabled person could expect.

    It might be useful, in a non-confrontational way, to remind the people who you interact with of their legal obligations.

  • Hi there, welcome to the online community and thanks for reaching out.  I am so sorry to hear of the difficulties you are going through at the moment.  Dealing with getting a diagnosis and what that means personally as well as disclosing it to others - who, as you said, do not always have a good reaction - is really tough to handle, on top of the care issues you mention you are having with your mother and the loss of your father.  It's not wonder you're feeling particularly vulnerable, but please know that you're not alone.  Our community is a wonderful and supportive place, and I'm sure they'll have good advice for you.

    We do have information available on the pros and cons of disclosing your diagnosis in various situations, which you might find helpful going forward: Talking about and disclosing your autism diagnosis

    There is also guidance on formal support you can access following a diagnosis and what you can do if the support isn't available or appropriate.

    Finally, I'd like to direct you to our new service, Ask ASH, which can help direct you to the right kind of information you're looking for on the NAS website by asking you some multiple choice questions.

    I hope these links are helpful to have a look at while we wait for other community members to chime in, and wishing you all the best going forward.  Please do feel free to post again and let us know how you are getting on.