Desperate for Help with Asperger's

You might find a MIND CASS course, or one from another organisation.  They look good and I'm keen to do one when COVID abates and I dare leave the house. I'd like to meet other autistic people living in my neighbourhood. But those courses of course are all about teaching us to cope in an NT world rather than telling us where to go and how to get help getting the NT world to bend a bit to us when we can't, sadly.

The only thing I need, and desperately need help with is access to physical health care - covered by the second of your bullet points above.  But social services are refusing to do an assessment.  They are adamant that 'autism' comes under 'mental health'.  I know mental health do NOT support this, even if I trusted them.

Meanwhile, the GP says talk to MIND CASS and MIND CASS says talk to the GP.

Meanwhile the paperwork and the responsibility for organising (not that I'm getting anywhere) is pushed back to the autistic person; yours truly.

The services don't get it, even when they are paid to get it and the legislation says they are supposed to get it!  I give in.  I'll just never have any health care at this rate!

Bang on though! :-)

Hi Guys,

Sorry for the late reply (I always seem to be juggling more that I can really deal with). I though for a long time that there must have been something that I was doing wrong that meant I was struggling to find the sort of help that would prove to be very beneficial. This isn't the first time that I've heard these sorts of testimonies, but I think the insight that you've all now provided me with have highlighted the fact that the reason I'm struggling to find help is simply because the help isn't really there, or is of fairly poor quality.

I will certainly reach out if I find anything that I think will be useful for you all.

It is disappointing that often people get a diagnosis and then…….there’s not much help that comes as a result of it. I think many services are frankly not much use (my son is having therapy at the moment and to be honest it’s pretty weak and unimpressive and it’s not helping him at all really). I think often the best advice and support comes from other autistic people. Looking at what I’ve read on here many autistic people have great insight into their difficulties and they often come up with ingenious strategies themselves. I think you’ll find as many strategies by researching  online as you would from paying a therapist to be honest. Talking to other autistic people and seeing how they manage is often the best idea :) 

All I can sugest is that you quote the "Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy" to them which says:

Under the Care Act (from April 2015), local authorities must:

Carry out a supported self-assessment of the care and support needs of an adult with autism if that is what the adult wishes (providing they have capacity to consent);

and remind them that the autism act says this guidance:

Guidance or revised guidance is to be treated as if it were general guidance of the Secretary of State under section 7 of the Local Authority Social Services Act 1970 (c. 42) (local authorities to exercise social services functions under guidance of Secretary of State).

and that the Local Authority Social Services Act 1970 says in section 7:

Local authorities shall, in the exercise of their social services functions, including the exercise of any discretion conferred by any relevant enactment, act under the general guidance of the Secretary of State.

and that in the court case of Regina v Islington Borough Council Ex Parte Rixon the court found the council must follow the guidance unless it has a good reason not to. Therefor the question arises what good reason do they offer for refusing you an assessment given the guidance says the local authority must if you ask them to? Not the NHS or the health carer it says the local authority must do this.

Oh my good god, did I write this? Whew!

hi!

Except that our social services are refusing to do an assessment for me telling me it's health carer's responsibility, meanwhile health say it's not their responsibility. Meanwhile, I have no health care.

Congrats on your First.

I can relate to a lot of this (apart from the sensory seeking - I was even terrified of stairs and slides as a kid; more like sensory avoidance for me). But you are not alone.

Sadly, I have no magic answers other a hand with life's executive, but that relies on family. I have a similar problem with accessing health care - and all the agencies throw the 'executive' for organising that back on to me as the autistic person.

Seriously, there seems to be nothing out there. If you find some answer I'll want to know too.

I'm no expert but some of the things he, like issues with substance abuse, difficulty with health eating and exercise, issues with paperwork. This might be stuff  social services could help with. Have you had a needs assessment to see if you need help from social services? The care act says your assessment should consider the following aspects of your wellbeing that you might need support with:

• personal dignity (including treatment of the individual with respect);

• physical and mental health and emotional well-being;

• protection from abuse and neglect;

• control by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided);

• participation in work, education, training or recreation;

• social and economic well-being;

• domestic, family and personal relationships;

• suitability of living accommodation;

• the individual’s contribution to society.

A lot of what you're talking about would fall under that. The question is how much could they help you with practically. I mean they could send a social worker rough to help you with paperwork, CVs, etc. 

Post-diagnosis disappointment should be in the DSM 5th edition as a symptom of Autism, at least for adults. That disappointment comes when unmet expectations, that society will help us cope since we have a disability, are allowed to dominate happiness that we have found a place we belong (our tribe if you like the language of neurotribes).

Low expectations of societal help enable more focus on self-understanding, and either being kind to ourselves or a possibility of behavioural change.

Sorry if that sounds miserable or pompous, I am not good at finding polite language to dress my thoughts in.