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Society Is Letting Autistic People Down

AGXStarseed

Well-Known Member
(Not written by me)


Research by the National Autistic Society recently revealed that just 16% of autistic people are in full time work, a percentage which hasn’t changed since 2007. This is the end product of living in a society where autistic people are let down at every stage in life. As a politician with a particular interest in autism, and a parent of an autistic child, we have come together to set out a simple plan of ideas which could make life better for autistic people (One in 100 people according to the National Autistic Society) as well as those who educate and care for them.

Early diagnosis and intervention enables small changes to be made before behaviours become so ingrained that they are almost impossible to change. Waiting times for diagnosis for autism and child mental health remain a postcode lottery. In some cases it can be up to a year before children are seen even for an initial referral appointment, but the waiting time for diagnosis is often much longer. One nine-year-old boy wrote a letter saying “When I wake up there’s this horrible feeling down inside me... I could just kill myself and I wouldn’t have to face today”. Despite the fact that paediatricians believed this boy to be on the autism spectrum, he had been waiting two years for a proper diagnosis. What would society say if we made people wait two years to be treated for a broken leg?

At school, parents who successfully get their children assessed as having special needs should get the help they need. However, many autistic children do not, because their parents do not understand how the system works or are not sufficiently articulate to challenge their local education authority. Nationally, 86% of Special Needs Tribunal cases are won by parents, which results in millions of pounds of tax-payers money being wasted on legal fees. It is a particular injustice that only the more articulate, sharp-elbowed middle class parents are likely to appeal their child’s case in the first place.

Parents may also not know how best to deal with their autistic child, which can be draining at the best of times and may involve using different techniques to those you will find in the multitude of “how to be a good parent” books. Something needs to change to ensure that parents are routinely supported and equipped with strategies to cope with bringing up an autistic child.

At school things are not made easier. According to a survey carried out by the charity “Ambitious about autism”, 40% of parents reported that their son or daughter had been informally and illegally excluded in the last 12 months and 20% had been excluded formally. This is evidence that more must be done to support autistic children (and others with special educational needs) to ensure that the support they get is not just focused on the 3 Rs but also on learning behaviours which others acquire naturally as they get older.

For employees in customer service/front desk jobs such as doctor’s surgeries there is also a need to provide training on autism awareness. That way, rather than rolling their eyes or not knowing what to do in order to cope with an autistic child who is having a meltdown they can learn strategies and techniques to manage these situations calmly and sensitively. Maybe just as women who are expecting babies wear “Baby on Board” badges, should parents with autistic children be given some form of simple card to explain the challenges they are dealing so as to inform customer service staff of the need to be a bit more patient and tolerant? Some parents may not want this but others will see this as a way of reducing their stress levels during these experiences. Some countries have gone further than the UK in treating autism as one would a physical disability, for example by providing a disabled badge for parking your car.

Transitions to adulthood are a vital area where much more needs to be done. There is very little information on whether children find it easier to work in certain professions (for example ones where routine and structure is required). Only by learning more about how autistic children do later in life can we make sure that their education is sufficiently tailored to maximise the chances of them entering the workplace successfully.

Only a combination of more resources, more dedication, more support and more understanding will help ensure that every autistic child lives a life worth living.

Norman Lamb is the Lib Dem MP for North Norfolk and a former health minister

Chris Key is a campaigner on mental health and autism. His eldest daughter was diagnosed with high-functioning autism this year


Source: Society Is Letting Autistic People Down | The Huffington Post
 
If Autistic people are on disability, they cannot work or will lose services. This article shows they have no idea, still. Single Payer health care in the only way to let disabled people try to work without being penalized.

There are many who ARE working, and making it might I add, so this is just those who are on Dis.

What troubles me most is the high rate of suicides among HFA.
 
[trigger-talk about suicide]



If Autistic people are on disability, they cannot work or will lose services. This article shows they have no idea, still. Single Payer health care in the only way to let disabled people try to work without being penalized.

There are many who ARE working, and making it might I add, so this is just those who are on Dis.

What troubles me most is the high rate of suicides among HFA.
the article is from the UK which does let people work while being on disabled living allowance/personal independance payment OR employment support allowance which is for people who cant work through illness or disability but your only allowed 16 hours or less of work and your work cannot contradict what impairments you said you had,like if you said you cant stand up alot or move fast but you became a referree at a football match [yes it has been in the news multiple times before,you wouldnt believe it would you] you would be summonsed to a meeting to discuss your future on the benefit,and possibly face court and have to pay back what you were given.

i agree about the suicide rates, but it also affects LFA to;just not as much but the impact is still there-we suffer greatly from depression but dont get to express it as well as HFAs ours usually shows through challenging behavior and lack of motivation!
i have tried to kill myself various ways since i was 15,ive jumped out a high floor window [but everyone thinks i was trying to do something on the outside of it because i have no sense of danger],ive took multiple overdoses,ive tried to cut my carotid artery but as well as damaging myself i accidentally hurt a staff with the blade who was trying to get it off me which i will never forgive myself for,ive tried hanging myself,ive tried cutting the main veins all along the underside of the wrist...i really dont want to live but i now carry on for my cat mr shadow,if it wasnt for him i wouldnt be here, there needs to be so much more done on mental health of autists.

what i also dislike is when autistics also have a learning [intellectual-US] disability and are supported by the social services learning disability team, they cannot be visited by the crisis team because they are attached to the mental health team;which aspies [with mental health issues] come under and theres no crisis help under the learning disability team.
this has caused me to have more suicidal attempts and end up sectioned for extreme challenging behavior, the most the crisis team has done for me is while in aciddent and emergency;they give me injections of haloperidol or prescribe more lorazepam and lecture me about trying my hardest to stay out of greenways or other hospitals because of how noisy and challenging it is.

Some countries have gone further than the UK in treating autism as one would a physical disability, for example by providing a disabled badge for parking your car.
the UK do that to so their information is wrong,ive had a blue badge for many years because my autism is acute and because i also have mild learning/ intellectual disability which affects how my autism and functioning presents-its also possible to get it if you are aspie and suffer from very severe issues with being outside that endanger your life if you dont have quick or close access to a car,however without enough professional backup this criteria tends to only let you get it if you have severe or moderate classic autism along side learning disability but i do know of some aspies who get it,they had to fight for it higher than the tribunal level i think.
however its very common for aspie children to get blue badges.

yet again this article focuses on the kids,when will we adults get a look in? what about the lack of support for HFAs, the lack of person centred aproach and poor treatment for LFAs.
the way support staff dont encourage many LFAs to be more independant such as learning to speak [they assume LFAs will never verbally speak] ,having a voluntary job or even being able to choose the food the staff order if they live in a residential setting.
the way HFA adults are thrown out into the big wide NT world without preparing them for life,lack of sensory integration therapy for adults,lack of official autism support dogs for adults [theyre only funded for children in the UK],lack of support for HFAs who DONT have a mental illness as they dont come under the learning disability team nor mental illness team-who will support them?
you see,we have so much more issues that need dealing with but none of its getting done because tghe funding goes to children,we arent cute little innocent things anymore-we dont belong here.
 
Great points toothless, getting thrown into the neurotypical world is very challenging and I hope more programs open up to better integrate HFA into society.


I had to wait until I was 36 to be diagnosed with aspergers. I wish things were different with my mother because I feel she could have done more if she was capable of. I I was diagnosed when I was younger, then I wouldn't be in the place I am now, which is a uphill battle everyday.
 
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Great points toothless, getting thrown into the neurotypical world is very challenging and I hope more programs open up to better integrate HFA into society.


I had to wait until I was 36 to be diagnosed with aspergers. I wish things were different with my mother because I feel she could have done more if she was capable of. I I was diagnosed when I was younger, then I wouldn't be in the place I am now, which is a uphill battle everyday.
hi clintos, its you who has put up with the most s**t not todays children who are growing up in a much more understanding world,youve had to put up with oldskool ways of dealing with us,its unfortunate youve had to wait till 36 but at least you can say you are a fighter and have survived any crap thrown at you,be aspie and proud,i am autie and proud. :)

i know there are a number of social clubs in the UK for HFA [some also accept those of us with LFA if we do not have behavior towards other people and have our own support staff]
but there isnt enough,these clubs tend to be around major towns.
many autistics are crying out for social/meet up groups.

i think there needs to be a further education course in colleges for autistics to teach them independant living skills, currently there is only that option for autistics under 25 who also have some level of intellectual disability,its like they think once we all reach 25 we either are completely normie or we just end up in day centres.
funnily enough,because im 32;to access a daily living skills course called ASDAN towards independance,ive got to attend a day centre which offers the course on a tuesday to any age, awful isnt it? though to be fair i do like the day centre side of it to,you do everything from arts and crafts,to exercise to going out to fun or educational places.

my uncle jimmy is in his early 70s and he is a typical textbook but undiagnosed aspie, he is currently suffering from very bad autistic burnout [something that happens to a lot of older HFAs, because you get less or no support and end up not able to cope] hes been in hospital for the past two weeks as he has completely neglected himself and has ended up with kidney failiure and untreated diabetes type 1,the family have now realised he cant look after himself and have taken him in but he doesnt like being around other people,so-a lot of fighting going on.
i wish he would get diagnosed so that he could get understanding he needs instead of family constantly taking offence to his straight manner,a lot of the family have called him gay and strange for years because he is asexual to and doesnt want a relationship, he is married to his obsession-ie his farm.

sorry ,ive waffled on.
 
Toothless I agree with everything you said I feel that I am at the point where burnout can happen at my age of 37. But I fight on, and I am educating myself about my condition so I can learn to do things myself with minor help from the government. I want to be independent but at the same time I get so depressed that I want to just give up and move into a home. I am learning alot from this site thou and will continue to fight to be independent.
 
(((((((Toothless!!))))) You could not have stated EXACTLY what it is like more perfectly. Exactly. What happens when we are not cute kids anymore?

Do you have family that cares about you, Tooth? Or is Mr Shadow the only one in the world that is there for you? I get that because cats rule. :)

Oh, I do think you can work here, too, for a bit but if you go over, you lose health care. That is the trouble. We don't have universal care so people can't save money or work because it's not just benefits they lose, but health care, too. So no one dares because they are too scare to lose health care.

And oh, those crazy laws and rules!! We have them , too. We have groups that are given money to handle the cases but they are always full. We also have a crisis team and that is OK until they find out that you are on the right insurance for the holding tank and then cart you off even though the guy next door just had a nice chat to calm him down. Different insurance means different treatment.

As fort he Autistic kids today -----I am not sure that the youngsters today will have it any better when they grow up. You hit it when you said we are thrown into the NT world with brains that are not programmed for it. I am not sure ANY amount of sensory integration would ever help me get through a trip to Wal Mart without earplugs and anxiety and total overload.

Further it's also the massive let down. When you are young, people try to help you, but if you have developmental disorders, you don't grow up. I am still 12. No amount of preparation could get an eternal 12 year old ready for the world. It chewed me to bloody shreds.

I hope you are in a good place now, Tooth!! If I were over there I would come and say hi if you ever wanted and I would have no perfume on to torture you!!
 
Great points toothless, getting thrown into the neurotypical world is very challenging and I hope more programs open up to better integrate HFA into society.


I had to wait until I was 36 to be diagnosed with aspergers. I wish things were different with my mother because I feel she could have done more if she was capable of. I I was diagnosed when I was younger, then I wouldn't be in the place I am now, which is a uphill battle everyday.
I have the same issue.

I am only 31!


-----
To be fair I suffer from a lot of other and a newly diagnosed genetic Vitamin D deficiency (mine is dangerous low).

Add on top of that:

My mother is mental unstable and didn't get diagnosed with the severest form of bipolar disorder until 37 (I was 17). She was a horrible mother who treated me to the appoint that I could have had her jailed. She also leaned heavily on me until i went college.
It took her 10 more years to find out she was lithium resistant (meds didn't work). She had to find a wholly different class of medication. She is still not fully stable.

My first step dad was a horribly abusive drunk, who took it out on me. He also regularly did drugs and was mental unstable due to mental illness (he still is unstable). I dealt with him for until I was 12!

My own dad resents me, because my birth "ruined" his life.
My parents had me when they were in college.

Then add medical roulette I went through to for the past 6 years, THIS IS WHY I AM ESSENTIALLY BURNT OUT!

THIS IS ALSO WHY I AM BEHIND IN DEVELOPMENT!

Seriously when you spend the first 20 years of your life putting your energy into stablizing everyone else, you wind up exhausted and extremely behind your peers. Same thing happens to nations, cities etc...

Being tossed in to the NT world and endured therapy to become normal made things a tad more difficult, but it was not was caused me to be in this current position I am in.

If you remove what I had to deal with growing up and in college, then I'd be that much better and that much farther along in life.

Will I ever catch up with my peers in life? Possibly, but it is widely known that people who grow up with that great of instability and abuse, rarely ever catch up to their peers because it has impact at every stage in life.

Every stage in life is built upon the previous stage, every negative and positive events ripple forward aka snowball to the next stages.

Those who are advantaged in the beginning normally retain those advantages and/or gain even more advantages going forward.

Inverse is true for people like me, where the negative events Snowballed into bigger and bigger negative events causing us to fall even further behind.

Add in the fact that disability and mental health services are practically none existent in most of the U.S., it just makes it that much worse.
We don't even provide much assistance to children of abuse and instability.

I'm not bitter, but I'm definitely not happy with what happened to me and how it keeps on effecting my life.

What really unnerves me, is when people tell me that I can easily overcome it and give me the "bootstrap" speech.

No I cannot, because I've literally been delayed at getting to key stages in life, due to the lack of life development first 20 years (I'm referring to life not human development).
 
I had to wait until I was 36 to be diagnosed with aspergers. I wish things were different with my mother because I feel she could have done more if she was capable of. I I was diagnosed when I was younger, then I wouldn't be in the place I am now, which is a uphill battle everyday.

Hey, Clintos - not to be trite, but it does get better. I am 62 and found out about 18 months ago that AS is what has made me 'peculiar' all my life. In my family, I probably seemed normal, mostly (especially to my mother as my father had some form of AS, meaning I come by mine naturally) and it's only finding out that's given me the freedom to let go of decades of guilt and beating myself up about being a social dork and failed relationships and problems at work. I'm still finding out things that are Asperger's characteristics and I've found I can laugh at my foibles - Asperger's sometimes makes me do funny things, and that's ok. Asperger's is my super power (still working on the costume ;)).
 

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