G'day. 't is me.
As for my own issues and struggles they are well documented in my blog. But I will make it easy on you and indroduse myself here. I have been diagnosed with AS about a year ago after 23 years of wondering why I could never keep a job or a gf or cope with study (even though I was very good at it). I have previously been diagnosed with bipolar and depression.
I am interested to know how each of you make a living, how you can keep a job, whether you get money from the government and what medication you take, and, if like me you struggle to support yourself, why you don't want to be cured.
Best regards,
gewerq
So who buys the milk? Husband or state?
As for changing who you are yes we have a diference of ideology. I draw the line on "being myself" where doing so begins to hurt others. If I am not able to support my self at present, but know how to be able to, and choose not to, I don't deserve to have my food and shelter provided for me.
just because you feel that if you can't support yourself, you don't deserve help from others, that's your view. Others don't necessarily share that.
I didn't say that I said
If I am not able to support my self at present, but know how to be able to, and choose not to, I don't deserve to have my food and shelter provided for me.
gewerq, I live in the UK, here you cannot get benefits for disability unless you are disabled, which I am not.
Just having AS would not entitle you to anything, you would have to be disabled by it, this is determined in a specifc manner, such as you could not cook any food or bath yourself, and is most often given to people with physical challenges.
That is however only the case with DLA, which is the Disability Living Allowance, and which is not means-tested or linked with whether or not you are able to work. (It is not intended as a main income or income support if you can't work)
IMHO it is a very good system, because it is intended to help those that need it to cover extra expenses in daily living, regardless of any diagnosis they may have. Admittedly the system is not custom-made to cover the autistic spectrum, but where the need for extra support (such as with getting around or making sure a person doesn't get lost or wander off, familiarising with new places, shopping, help around the house etc.) can be explained adequately, this is not usually a problem. Of course they are going to try and not pay unless absolutely convinced of the need, but there are agancies that can help with filling in the forms and showing you which examples belong in which category. http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=300&a=3330
http://www.paains.org.uk/entitlements/benefits.htm
(And before you ask no I do not receive DLA but that is mainly because I hate forms and keep putting it off).
LGBT MIND in Brighton has a person one day a week who will fill out your DLA application form for you, and "straight" MIND in other towns probably provides the same service too.
THanks, I have in the past contacted the local citizens advice bureau about this but because of their limited opening hours have not been able to see them - I will give Mind a try.
Noetic, I mentioned the system for DLA to explain a little to gewerq qho lives in Australia, not because I am against the system.
I think it is a lot fairer than systems that I have seen in other parts of the world, and of course its reasonable that only people who need help should get it.
I didn't mean to say you disapproved, but you did not mention that this was only a specific (and minor as it does not exactly cover living costs, merely additional costs like taxis, home helps, additional equipment and materials etc.).
I have to be honest and say I dont know why you would apply for DLA, do you know that its extremely hard to get? You have to really need help, a boy who was blind was refused in my area, and also a man who could not cook for himself at all, or care for himself, but could go out of the house for walks alone.
I do know that some decisions can be a bit odd, but I know several Aspies online who do get the minor component for care (as well as some who get the minor mobility component), mainly because they can't (continually) look after themselves independently.
Things like paying for taxis (because of difficulties with public transport), paying extra to get food delivered (because of difficuly coping with supermarkets, public transport and carrying multiple shopping bags), paying people to do things around the house (that can't be done due to balance issues or exectuive function problems), extra material for visual schedules, buying earplugs and tinted lenses for sensory issues, having to buy two tickets because you can't get to new places unaided or get confused or shutdown when overwhelmed etc. all cost extra money and they are not luxuries but often things people need to be able to function on a daily basis, or to be able to continue staying in employment etc. (And in turn of course if someone loses their job because they spend too many nights awake from sensory issues, or can't cope with looking after themselves etc. then that's surely gonna cost the taxpayers more than fifteen or whatever £ per week?)
People with children on the Spectrum may need extra clothes, need to attend the child at night (because he/she gets frightened or runs away) and may need to continually supervise a child while outside.
Surely there are some cases being turned down for ridiculous reasons but if the forms are filled in correctly (not like this guy, who did not give a single reason or example where he requires help, answering "No" to all questions about help required in daily living, yet refused to accept their decision: http://www.hywels.clara.co.uk/commrs/cdla/dl013101.htm) and if there is clear demonstrable need for support (this includes help with forms, making calls, buying provisions, transport etc.) then I do not believe such cases to be the norm.
The reason why there are different levels to the DLA (3 levels for care, 2 for mobility) is to cater for differet degrees of severity of problems. I wouldn't dream of asking for anything higher than my actual needs but I do pay my taxes and I do have additional expenses and have to forsake many other things in order to cover those.
If you haven't been "Med 4'd" - no longer required to produce medical certificates - you'd have no chance at all so far as I can see.
All I know is that I know several young Aspies, some employed and some unemployed, some living independently and others living with parents or a partner, who get the low rate care component and got it with no problem. I also know of several who get the low rate mobility, and of some who get the high rate for their children (where the child really can't go anywhere alone).
Well good luck Noetic, if you need help I hope you get it, people should get the help they need. But I know of many parents of children with autism who have been refused, I wonder if its a regional difference, with some being extremely harsh?
It seems bizarrely random, IMHO. Perhaps part of the problem is also that they may be looking for a higher rate than is feasible, or that they are not focussing on the right kinds of answers? I.e. saying no problems getting about because the child can walk, even though the child can't walk to where he/she needs to get to unaided or without many prompts etc.
Dear gewerq from oz,
Hello and welcome. Both my son and I work full time jobs to survive. No one helps us with anything. My son's father also works but we are divorced. All of us are High Functioning Autistic Adults. Alas, My grandson is unemployed. I think it would be a crime if he worked, though as he is only 5 years old. His parents support him at the moment (without government help also). My grandson is dx'd PDD/NOS at this time.
We are able to work because we have NEVER believed we were broken, defective or disabled people. None of us have had any type of ABA crap done to us. We have had Autism in our families as far back as we can remember but until a couple of years ago, we didn't know the name for it.
A job is very difficult to find because very few places will give you a chance but even when you find a place that will allow you to work, there's no guarantees you will be allowed to stay because we never quite "fit in" with the way things have always been in the workplace.
I say, the time has come for businesses to change for us! If the business world put in ramps for the folks that need to use a chair for mobility, if they have to accommodate those that cannot see by putting signs and such in braille, and if businesses are not allowed to slander folks that are a different color, gender or a different race or sexual preference or they may face lawsuits, then I think it's time they allow us our basic right to work also. The only accommodation most of us need the right to be who we are without being ridiculed, bullied or hassled in the workplace.
Many autistics have the ability to work but just are not given the chance. With so many telling them they are broken, disabled and disfunctional it's no wonder that quite a few are so depressed that they can't even find the motivation to get out and look for a job. Hopefully such things will change soon...that's what I'm working towards.
Well it cant all be problems filling in the form, and if they arent entitled to a higher amount, they should be awarded a lower amount.
Yes I am aware of that. It does really seem to depend who assesses the application, as I have heard from people who practically just wrote that they have AS with some vague descriptions of living at home etc. (no specifics) and got it without a problem, yet I have also read descriptions of people who seem to have been very thorough in explaining how each point applies to them, yet got rejected :roll:
Mind you I'd rather take the actual SUPPORT (practical stuff) than money! I am sure a lot of the stuff I do now that take ages and/or cost lots of money could be addressed or solved better with a bit more practical support, but it is amazing how little you get out of people even if they are supposed to help or you try to become their client (coaching etc.).
On the other hand I do seem to have a knack for coincidences and "bumping" into people online while looking for something completely different (I managed to get in touch with an author on sensory issues for example) although I do also have a knack for glimpsing some sort of hope and getting somewhere and then not get any response any more. :?
Membership of Anorexics Against Appetizers is likely to be self-limiting as its more militant supporters waste away and are buried.
Suggests a transient fad evolving from bedroom computers of teenage girls looking for peer support in the war against their parents.
Malignant journalists and defective pundits like Shafer may well try to bracket us with this unhappy nonsense.
Stella
He also has a very strong point about getting the means of self support. I will go further here, though, and state that a safety net is needed for those who cannot function in the competitive work place. Some options should be available for those on the spectrum who want them, to help them deal with the NT public better. It is nothing personal against people on the spectrum. I just feel that a means of achieving goals being made available is important the autistic community.
I feel there needs to be a lot more funding and opportunities for adults on the spectrum, in every country.
When I see how many millions are raised for a cure for autism, and that is spent on funding scientists and their research, yet there is a pitiful amount spent on adult services, and there is no sign of that increasing. It is totally wrong.
I believe there is a need for a program that would act as an advocate for Autistic Adults presently in the workforce or those entering the workforce for the first time. If a grassroots program could be started by autistics themselves, maybe others like it would spread to other states. This idea has begun for me as a result of my own son (dx'd High Functioning Autistic) needing some sort of a support system after he graduated high school and entered the ranks of the employed. He had a lot of difficulties as a result of lack of information available to businesses. I have had to provide educational materials for his employers and even advocate for my son in a situation with the Union at his job, that probably would have ended in a loss of employment for him. They thought I had a Advocacy Group ready to pounce on them if they so much as tried to discriminate against him again. They did not realize that I was just an Advocacy Group of One. All of the difficulties he was having were associated with my sons mannerisms and trouble he had understanding the way most neurotypical folks expect him to act.
Help for those entering the workforce by providing the necessary benefits, services, materials (in the form of employee or employer educational packs) is needed. Guidance (by advocates and mentors) would be required to help in managing various difficulties with the workplace and remain employed so as to sustain independance. The Goal would be to also educate businesses/employers, helping them to see the many benefits of hiring a High Functioning or Asperger's Adult thus reaping the benefits of their diverse and unique abilities. This all should be organized by Autistics. Others on the spectrum and Neurotypicals sensitive to what we need to live independantly, could work as mediators between employers and employees, but many Autistics would be needed as Administrators, Advocates and Mentors (possibly a lawyer?).
Obstacles, such as friction between co-workers and employers, many times is caused by lack of understanding autistic mannerisms. Combining education for businesses, mediation and advocacy (along with a zero tolerance for discrimination stand) with counseling services supported with mentors will help assist autistic persons to maintain employment but also will benefit the employer by giving the company a happy and dedicated worker.
Becoming self supporting and self sustaining will be our best option for becoming a powerful force for future Autistics.
put anorexia and aspergers tongther is stupid anrexora is a mental illness and As is not. plus you can die for being anrexic but i never heard anyone dying form AS.
Just a thought on the anorexia and AS topic.
I have had many diagnoses and meds. Labels labels labels. i was anorexic for at least eight years. Down to 38kg. i had food problems (intolerances, swallowing etc) most of my life.
I got a label that fitted a couple of years ago. Aspergers. i do not identify with any others. My weight is normal and i am happily creative with food. (I do not understand why other people are so boring with their meals!) I do not like eating other peoples but that is a negative AS thing i am working on. If i haven't touched it i cannot taste it properly. Making it myself makes it less of a surprise.
The anorexia problem is huge. One in in five die. Someone with anorexia is not cured by the medical care they receive. Only the person with anorexia can find the way. But they need to be given the power. i can look at someone and see the risk they run of anorexia sometime in the future. They are usually struggling with AS and have absolutely no support for their own way of feeling and thinking. They have no power, they are covered all up with someone elses description of them.
I am not saying that people who may be AS are anorexic. I just think the male to female ratio of Autistic traits might be due to women and girls being sucked into a hysterical illness defined by a western medical model. I have heard it said that anorexia is like alcoholism. You never beat it, you just keep it at bay. I disagreen, all we need is a spindoctor to come along and put a positve spin on the words used to to negatively describe people. AS is the most balanced expression of myself, warts and gifts.
AS saved me from dying.
becca
There was something the author of the blog said in that post that really stuck out to me:
Now, it appears that the pro-Aspie community on the internet have reached their own critical mass beyond which point they now flatly reject any suggestion that they should strive for change to their own condition.
I don't know about anyone else, and I have no right to speak for any others, but I don't feel that's accurate at all with myself. There are many flaws in my character that I feel I must change. Change is the only thing I can do in this life; change and learn and grow. To stop changing would mean to stop growing. To become content would mean that I would simply mentally, intellectually, and emotionally stagnate. As I've said, there are many things about myself I seek to change, and that I know I'll never perfect myself, but I still strive to better myself as much as possible.
I don't think this should be confused with wishing not to be "cured." I don't think that "whatever's wrong with me" is a disease in the sense that anyone understands a disease (a physical ailment causing detrimental harm to the physical body). I just feel I don't feel the same as NTs; I don't think I think the same as NTs. etc. I'm different, and in that respect have no wish to be "cured" from my difference; but I constantly seek to change and improve myself.
Maybe I should say that I change for myself and no one else. I change for the improvement and expansion of my mind and spirit, not to please another. I don't believe that the latter is change at all, but only conformity.
Just tacking what I feel is a fairly important distinction on a minor point.