As a parent with teenager with Autism and also my self living with Autism after many years I was misslabled.
With the announcement of the NHS new plan, I am really scratching my head in confusion is this even real. Because day today experience allot of barriers in trying access basic health care within the NHS, but not just for myself but also for family. Experences so many problems like, the GP surgeries put their needs of their operation before the needs of ASD patient, not offering ASD friendly enviorment and is pot luck finding a surgery that is sympathetic to ASD needs.
Non existent support before & after diagnosis and the only way I got support, because I ended up in hospital for four months as just gave up living of trauma of whole experence. Getting the referral for the Autism is a horrifically long waiting list and getting on it even worse as very little trained to spot ASD in the first place within the mental health service. It like told waiting list is ten months for assessment, but it more like the NHS is like cooking the books, as have go through months and months of waiting just to get on the main waiting list. So take the waiting list and admin time I been waiting 16 months. Only reason I suvived the waiting list as already have someone advising me to sef care with Autism.
As a parent it like climbing the tallest mountain biggest challenge in my life in supporting a young adult with ASD. On the way up finding all the problems of non existant support and as parent completely organise everything and then I become really pushy parent, because support slowly melts away with good intentions, with no action and as a parent have keep the pressure on. Also have experence major trauma of bullying from professionals as soon blame you as a parent for child is failing to thrive not understand child has autism. It only when fight back as a parent to get the diagnosis that services went to bed your helpful friedcwithout saying sorry.
I am concerned as spent a life, where faced nothi ng but good intentions, lived like I was invisable, then suddenly NHS has a big plan, it all only to be fixed in one go. I am struggling to believe this is true and written my experences what like live with autism not because I hold grudges to anyone.
All I know at the moment is I work to exhaustion as parent and find times out for myself.
I hope it going to happen with the new NHS plan I proving things as could not even worse, can only wait and see.
Is it just me, is this a common experence of lack of support with autism.
I feel unsupported and have been blamed for my childs autism (now a adult) my son also has no support due to being unable to be correctly assessed in what his needs are. Iv stopped communicating with any professionals now, that too is wrong with no understanding that iv fought a lifetime for my son and there is no energy or hope left.. I feel isolated and unheard.
The NHS have years of experience of cooking the books. Like time on waiting lists. And targets.
I remember my mother being referred to the eye department at the local hospital. The official target was that people shouldn't spend more than 6 months on the waiting list for the first appointment. She was placed on a waiting list to get on the waiting list. There was no official target for this 'pre list'. After 4 months she was offered a place on the real waiting list. And we had to confirm that she wanted to go onto the real waiting list. Then a 6 month wait on this real waiting list.
Total waiting time to be seen by a hospital consultant 10 months.
I've been extremely well supported post autism diagnosis.
I have been very well supported by the psychiatrist who diagnosed me and by my work coach at the job centre. She's been amazing and organised my first support worker via the local social services department. She knew little to nothing about autism but she was great. She was a great support and still keeps in touch with me even though she has now left that job. She learned a lot about autism from me and I learned a lot from her about how to achieve my goals.
I was then referred, again by my work coach, to have one to one support from autism plus. That was amazing. I learned so much self awareness. And I have just been referred back to them, again, sort of via my work coach as she referred me to REED who then referred me to autism plus.
I don't really go to the doctors unless I want something specific, for example, a sick note or a particular drug, but apart from that, I'm not sure how an almost stranger to me, could possibly help me. I respect their position etc but I tend not to turn to the medical profession for help.
I also get a tremendous amount of support from the people at the weekly autism group I go to. I learn so much from the other autistic people there as well as just from being there in general.
So yeah, I've had tremendous support.
My friend who is a mother to two autistic children, one who is so called severe and goes to special school and the other who currently attends mainstream school, also gets the biggest part of her support from the group she attends for parents of autistic children. And she went on all the courses she could get on to learn more about autism and how best therefore she can help her children.
I actually learn from her as well. Some of the little tricks and tips she teaches her little girl, work for me as well.
I have no idea of any new plans for the NHS as I don't listen to the news etc so can't comment on that.
I think it is a real big post lottery in getting right help or not ASD support depending which local Authority you have. i am glad you getting the right support and is helping.. My problems are complicated because I was misdiagnosed with mental illness for many years living with hidden ASD as in my youth Autsim was not understood, but seen as bad behavior. it only when I endup in hospital they spotted my autism and given a coordinator who is brilliant help, but then only getting her support because I am a suffering from PTSD, So every where is not the same, I wish it was the case as also have to fight as parent to get the right support also for my family.
I could not agree more the NHS on targets and waiting list can be seen as manipulating and frustrating for patrients. When situation saying it only 10 months to wait for the patient, to publish waiting times across the UK stating this, but leaving out the finer details.
In reality that waiting time is only when your on the main waiting list itself, and not all the mini waiting lists like referral time, acceptance of offer, filling in treatment questionnaire posting it back before even get on the main waiting list. It like when in hospital, been referred to ASD assessment, but they will not start processing the referral when i have left hospital even that given a due date to leave! Its really irritating because they put you through all this multiple hoop jumping over many months, then only give you two weeks accept the offer and mail man loose the letter, back going to ask for referral.
i would hate for a situation the NHS started opening a shop, hang on they did, it is the Dead Parrot from Monty Python. The Parrot not dead it sleeping, who are you trying to kid, its dead!
My problem there is virtually no Autism assessments within my local authority so its a snails pace Olympics! These fast speeds I cant cope with as too fast for me to cope with!
i'm so sorry that you are feeling isolated and unheard.
You may like to contact our Autism Helpline team who can provide you with information and advice. You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). The Helpline is often very busy and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform: