The link to this petition was originally shared by NAS37934 (and corrected by Cassandro) in the ‘Blogging with autism’ thread, but it’s not very visible there so I thought I would put it in a new thread in the hope that more people would see it.
Good to see it's got to over 27,000 signatures. If it can get to 100,000 I think it stands a good chance of being taken up by MPs. Is it also being supported by NAS? The way it's worded, this would benefit most of us one way or another, not just in dealing with crises and tragedies, but having our concerns understood, Hey, imagine, you might even have psychiatrists understanding neurodiversity instead of prescribing inappropriate treatments.
The petition reads:
Prevent avoidable deaths by making autism/learning disability training mandatory
My son Oliver was only 18 when he died in hospital on 11 Nov 2016. I believe his death could have been prevented if his doctors and nurses had received mandatory training. He had autism and a mild learning disability, and they weren't trained to understand how to make reasonable adjustments for him.1 in 4 healthcare professionals has never had training on learning disability or autism. This is unacceptable. Two thirds want more training, and 1 in 3 think a lack of government leadership is contributing to the problem of avoidable deaths. The Government must ensure all healthcare professionals get mandatory training to address the huge health inequalities facing people with autism and a learning disability. For more information search for: LeDeR report 2018; CIPOLD 2013; Treat me well 2018.
Maybe we can promote this, and highlight what happened to Oliver, through sympathetic friends and local organisations.
That it requires a petition in order for people like us to be provided with basic service freely given to everyone else is a tragedy, and is the reason for my considering starting another petition on the same site to make neurodiversity a separate protected characteristic. I'm not trying to hijack this thread, and of course I signed this petition and enthusiastically encourage everyone else to do so as well, but please also see the thread I just started regarding the other petition (Petition to make neurodiversity a separate protected characteristic in the UK - National Autistic Society - our Community).
Cassandro said: Is it also being supported by NAS?
Sadly, I doubt it. When I once asked about a similar petition (about training for mental health professionals), they said they don’t support petitions as they get so many request to do so. I then asked them what they were doing about the problem themselves then, as mental health problems affect many individuals with autism and we need proper help for them, but I got a response basically saying they had campaigned for GPs to have more awareness of autism. What that had to do with mental health professionals I have no idea! I asked again specifically about mental health problems and linked studies and personal anecdotes, but I never got a response from the NAS despite repeated chasing. I then gave up as it was clear they didn’t care.
The above is a great petition though, and I hope it gets the 100,000 signatures (it’s doing well so far). It’s just so sad that the family have had to suffer such a loss for this issue to be highlighted to people.
DragonCat16 said:That it requires a petition in order for people like us to be provided with basic service freely given to everyone else is a tragedy
I agree wholeheartedly. I will go and have a look at your link.
Hi there, I looked upon this thread and my initial thought was yes. I think time has come for change or for those with autism who have said enough is enough. There are too many innocent lives by those affected with autism and learning disabilities. Not just that the suicide rate is very high for those on the autistic spectrum. Too many lives are being destroyed and with that consequently resulting in tragic situations. So many lives are at stake as it is. One too many if being honest. Of course, no one wants to have to take drastic action but unfortunately that is the only way voices will be heard.
I agree that there does need to be mandatory training for healthcare professionals regarding autism and learning disabilities. It is hard to believe in this day in age that still there is a lack of understanding, discrimination amongst other things. What some people do not realise is the complexity and severity of how ones autism can significantly affect their quality of life no matter side of the spectrum you are, whether non-verbal or verbal, male or female it affects everyone differently.
With that said, I feel quite strongly about this. Because time and time again, it is usually someone with autism on the receiving end. It kills me inside when you hear someone with autism on the news typically negative outlet. I am tired of the suffering and enduring one has to go through to then finally get acted upon or the possibility.
We all have a choice, even if they cannot hear our voices we do. We all matter, we all have a purpose, a reason, meaning. This goes far and beyond just being autistic itself. For me, it is for acceptance, equality, integrity, respect as well as other attributes. People have fought hard to recognise that people with autism and learning disabilities matter and should be acknowledged.
This is not a joke this is people's lives at the frontline desperate times calls for desperate measures. The reality is from how I see it from previous experiences is that people with autism or learning disabilities are seen as second class citizens. How can we expect change if others are not taking us seriously. It comes at our expense as well as theirs which leads nowhere in most situations. The truth of the matter is if nothing changes I dread to think we there things go long term.
You think that you are not good enough as well as the complications that come with it is a challenge in itself to overcome. It is yet another opportunity for someone to say you are wrong to be put down especially when you feel like giving up after numerous attempts. For me, I use this as a drive, a motivation not for a just today, tomorrow but for a ultimately better outlook within time.
I think I'd rather sign a petition to have all health care professionals trained in learning about good health, that would include autistic people as well and it would save a lot more lives. I do my bit to spread awareness and understanding about autism by telling everyone I meet that I'm autistic, which includes health care professionals. Does your acceptance, equality, integrity and respect extend to all those who don't understand autism as well? And just out of curiosity, what are you doing to spread awareness and understanding about autism and what do you say about it? I'm really curious to hear your answer to this, following some observations of videos I've been watchin by autistic people and some articles I've recently read. I won't tell you what I've found interesting about what I've heard/read until you tell me what you think, what you say about autism. If you had a platform now, to tell the world about autism, what would you say?
Hi there, sorry for perhaps going off key or over the top. It is not my style I do apologise if my context appears out of line or cross the line. The main purpose of what I was trying to say was you are not alone, don't suffer in silence.
However, reading back what I have written didn't come clear. I suppose I acted upon on what I thought rather than looking at it from a more elaborative perspective. But, in response to your query about what I have done to spread awareness I am part of a team focusing on learning disabilities such as autism within a council format, I go to workshops regarding learning disabilities and mental health, volunteer for those with autism.
With that, I also take the opportunity to go and attending meetings on the agenda e.g. education, abuse, services such as mental health etc. I myself don't hesitate to inform others that I am autistic. I never felt that I needed to hide it or be silenced.
As far as I know without sounding repetitive or too much 1/3 with ASD are non verbal, four times more common in boys than girls, 1 in 100 people in the UK have autism (700,000), family relations possible link, incurable condition, each individual on the spectrum is different.
Autism in my words comes in different terms e.g. Autistic Spectrum Condition, Autistic Spectrum Disorder to name a few. It affects many areas of life such as social interaction, speech and language skills, sensory processing and motor skills.
Repetitive behaviours and routine is common for those with autism. Each person is unique and creative in their own way. In most cases, the development of autism can start from age 2 with treatment. Typically, an individual with autism are highly focused in interests. Facial expressions, gestures, jokes, sarcasms are not easily understood with someone on the spectrum. Most people with autism like their own space. Simple or short sentences are preferred as their easy to understand (no jargon). Eye contact is difficult as well as large gatherings, level of noise, sensitive to lighting and smell.
There is an element of being unaware of risks, usually someone with autism picks up on the last few words. Planning and preparation are important (structure). Autism can have a monumental impact on a persons day to day life some needing more help and support than others whilst some do not or who are independent. Commonly, people on the autistic spectrum (not all) would like to be in employment rather than not at all with that some reasonable measures or adjustments put in place.
I believe in having a two way effective communication with not just people with autism but those who are non-autistic. The way I see it this would make things more easier in terms of understanding autism for a wider range from both parties. Listening is another key element in the hope of making things more sustainable.
Autism for me is like rollercoaster in the sense that you are on this journey where it can go either way the unpredictability and also a scale because it is like placed into the unknown trying to balance the challenges and obstacles. At the same time, the positive is each person has their own stamp on things (which from where I see it is priceless, a gift). Some people on the spectrum is verbal whilst some are non-verbal.
I hope this answers some if not all.
Hi Otis, you don't have to apolgise for anything and I'm sorry if I made it appear that way. I have just realised (via some comments on YouTube) that I come across as aggressive so I'm being more mindful of how I say things so I'm sorry if I came across as very strong or aggressive, I didn't mean to.
I love how you're spreading the word about autism and I like your explanation of what it is and I especially like how you see everybody's unique way of experiencing the world as a gift. Like you, I want to create harmonious relationships between all people and I know that I have to learn to listen more to others instead of jumping straight in with whatever comes to my mind, to be able to achieve that.
Autism for me, is definitely proving to be a roller coaster of a ride and it's exhausting. I'm wondering, will it always be like this? Will I always find life so exhausting? Or more to the point, will I always be so exhausting? I think that when I get back into meditating, my mind will calm down a bit. And yes, that answers all my questions, thank you. I know I ask a lot of questions and very weird ones, if I had a pound for every time someone said, to one of my questions, 'nobodies ever asked me that before', I'd be rich! Lol! So thank you for taking the time to answer my questions and clear things up for me. You must be a great asset at those meetings etc that you go to. I found your words a calming influence to my zooming overactive mind.
Just to mention that it was brought up yesterday at the All-Party Parliamentary Group for autism (NAS-sponsored), by the 'minister for care', Caroline Dinenage. So at least her aides were aware it had 25,000 signatories. Hope we can push it further.
There was discussion of training GPs (through the Royal College), and some people brought up lack of post-diagnostic support for adults, but there wasn't a chance to discuss training of psychiatrists, who I think may be the biggest cause of iatrogenic harm to autistic people.
Hi, I did visit the link about petitions what I have noticed typing in the search box 'autism' it showed up with other links that might be worth looking into.
The first link is about 'Making Autistic Spectrum Disorder widely known about within the DWP Assessments'.
DWP stands for the Department for Work and Pensions for those who may not know.
As it stands there are 4,197 signatures.
The second link is about 'Mandatory EHCPs for children with Autism'.
EHCP means Education Health Care Plan.
As it stands there are 3,359 signatures.