Hello all, I thought I would begin to translate the legal jargon, of the parliament acts to inform you all about laws that affect our daily lives into simple understanding entertaining English, not legal nonsense. To save time for you I will only pick out only the relevant parts, and based on how messed up the current system is, why they suck. I am going to use examples in some level of detail on some parts of the government’s extensive autism act document
The very first thing, I have to say is that in the rules that organisations and the NHS, must follow about autistic people they are using, person-first language, like some has autism person with autism. This is bad and dangerous for so many reasons. One of the biggest reasons is that Autism is separate from who we are, which couldn’t be further from the truth. Let me explain why, to those autistics who could think autism doesn’t define me blah blah blah. Autism is very very commonly characterised as a neurological condition, which is somewhat true, but mostly false, it is not a condition it is a neurotype, a different type of brain which affects the way ,we think we feel, we communicate what kind of relationships we want to have a lot of time, what kind of things we do, whether we are interested or not in small talk – spoiler alert we are not. Now notice there is a very slight difference between a neurological condition and neurotype as it’s both about how a brain works, but the difference is that neurotype normalises autism and autistic people and sends a message people appreciate just you know our existence.
Some rules of the statutory language of the Autism Act taken directly
Councils and the NHS should work together.
They should make sure people:
• do not go to the hospital unless they need to
• get the right care in their local area
• get support to live in the way they want to
Ensure that GPs, as the gatekeepers to diagnostic services, have adequate training
specifically in autism beyond general awareness training (as outlined in Section 1) and
a good understanding of the whole autistic spectrum and the diagnostic pathway
that has been developed in their area. This will enable adults with autism to be
supported more effectively from the start of their assessment process.
This an extract from the autism strategy document from thew act and I would like to talk about it as it pretty much reflects what the current problem. One of the problems with this it talks about a good understanding of the whole autistic spectrum, while that is good and that ethos and mindset brought up from that point raises all size fits all sort of atmosphere. What’s more in the document, there is nowhere in the whole specific document that outlines what qualifies as an adequate understanding of the autistic spectrum, which I have to add only comes from having autistic people who can work on this because we just know what to ask. Currently, adequate understanding is viewed among professionals and governments like total understanding supported
supported more effectively from the start of their assessment process. This has never been done properly in the entire ten-year history of the autism act. Because proper support of autistic people after the assessment needs to include information on mental health, the fact we feel things lot more, there needs to be an introduction to other autistic people, so we know how autistic people are, so we do not feel crazy or alone. There needs to be a link to a shop, that allows autistic people to stim toys so they can stim at peace. The assessment process also does not cover all of the topics, and nowhere near the support, that autistic people need. because they need to upfront what support is available for them.
This is the information from the national institute of neurological conditions, on the indicators that someone is autistic. and I will talk about why every one of the indicators they use is out of date and some blatantly inaccurate. and what we can do to reform them .
- no babbling or pointing by age 1
- no single words by age 16 months or two-word phrases by age 2
- no response to name
- loss of language or social skills previously acquired
- poor eye contact
- excessive lining up of toys or objects
- no smiling or social responsiveness
Later indicators include:
- impaired ability to make friends with peers
- impaired ability to initiate or sustain a conversation with others
- absence or impairment of imaginative and social play
- repetitive or unusual use of language
- abnormally intense or focused interest
- preoccupation with certain objects or subjects
- inflexible adherence to specific routines or rituals
If screening instruments indicate the possibility of ASD reflected, true recognition of autistic people some of there will be different options and criteria for literally everything people looked in a scale from extroverted aspies do not, and get to that, you will need to interview a variety of autistics, especially the most vulnerable ones, because those indictors generalise autistic people which is very dangerous, because there is a lot of different needs that need to be accommodated for . and this generalisation, is risking lives at this moment .
To improve the discussion on autism support within goverment and all orginisations have a department specifically in charge of autistic support and autistic representation, who can reach out and have a mandate of reaching out to the autistic community so as to have support in place for all autistic people.
Ensure that GPs, as the gatekeepers to diagnostic services, have adequate training. Now, this is dangerous as GP’S are not autistic so they do not have a first-hand experience of what it is like to be autistic and because the current expected standard of understanding of Autism is so narrow it misses the majoirty of autistic people.
We have talked about a lot of systemic issues of the Autism Act, through its vague definitions, wrong use of language, and not to mention its complexity. Another issue is that when the Autism is act is mentioned to the Autistic Community they think it’s providing a standard of care it really doesn’t, it only outlines what needs to be done, its like care for autistic kids is a present in a box wrapped in pretty wrapping paper and a card ,and when you open the present its empty and you only have a fancy box with a card saying what it is, that this Act is
So what can we do to fix this situation and fix inadequate legislature, one is made Autism as a protected characteristic under the equalities act force companies and public service organisations to institute mass systemic reform for autistic people change the Autism Act, to agree provisions , agreed by a panel of autistic people who will have a specific mandate of making sure to reach out to as many autistic people as possible
I am the founder of the Autism league .My mission is to unite autistic people to be independent and be their own super heroes .My name is Mark Blake and I work together with a group of like minded autistics to provide you with information on autism ,what causes it how to support autistic people . The Autism league will continue its mission , until every autistic person is supported cared for in the right way , and can live independent lives .