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.
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: