Would you all agree that Autism and Asperger's Syndrome are the most ignored and disregarded conditions in society today? In many places we still are falling in-between the mental health services and the learning disability/Down's Syndrome services. Those are often the criterion which social services and community groups judge that disabled individuals need to be in to gain access to support when living alone independently.
If you are not in those groups you receive limited help or nothing at all. Therefore many people with AS and even Autism are left to their own devices and are left to struggle. Often there are no support or social groups for individuals with Autism and Asperger's Syndrome, to help with applying for Incapacity Benefit, DLA and Tribunals. We are usually isolated and therefore, rather than be totally isolated, some of us go to groups that cater for individuals with mental illness or learning disablity/Down's Syndrome. Then with benefits there are problems. We are viewed as too disabled to work by NT employers but too able to claim Incapacity Benefit and DLA. As a result of this, those with AS will remain on JSA and will be hassled and pressured into seeking any job going. The Benefits Agency will be ruthless to them in this situation. Why wouldn't they be? Someone with Asperger's Syndrome has been found fit and therefore available for work, just like Mr Neuro-typical of 2004, Fred Smith of 29 Acacia Avenue has been. But the 'any job' that someone with Asperger's Syndrome would be hassled into finding by the benefits agency isn't likely to be suitable for them as it would be for Mr Neuro-typical of 2004 Fred Smith, of 29 Acacia Avenue, and there is a strong chance it is unlikely to meet any of their needs as it would those that Mr Neuro-typical of 2004 Fred Smith, of 29 Acacia Avenue has. This wouldn't matter to the benefits agency, they would be ruthless with an unemployed person with Asperger's Syndrome just as they would with the unemployed Mr Neuro-typical of 2004, Fred Smith of 29 Acacia Avenue.
Would you agree that AS is an inbetween condition?
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kaspieman, I dont think that AS and autism are the most ignored conditions in society today.
There could be many others that we don't know exist, because we hear nothing of them. Maybe Rett's for instance, Fragile x gets less attention, I know there is a condition where people cannot go out in sunlight ever, its seldom mentioned.
I agree that it is very, very misunderstood. Have you been having a hard time getting services, or being pushed onto schemes?
Well I will reword that slightly Amy. They are "among" the most ignored conditions in society today. They are misunderstood and often there aren't support groups for individuals with them in many areas, who then either to go to MIND, which is for mentally ill people for Mencap for people with TLD/Down's Syndrome. It is often hard also when applying for DLA or Incapacity Benefit as many Welfare Rights Workers aren't aware fully of what they involve so they can't help you do the forms or put what is appropriate to get these benefits and help. Over half of people with AS are turned down for Community Care Assessments.
Its a strange thing with support groups, people seem to try and set them up, and they often fail quickly or never get going at all.
Is it that the social differences of people with AS are not suited to meeting up in groups? I don't know. Would a group that wasn't labelled "support group" work better?
You may have a point in that, giving that Aspies are less gregarious than people with mental illnesses generally and people with TLD's/Down's Syndrome, but it would be nice surely for some with AS for somewhere to go without having NT's judging them and not feeling like the odd one out, and yet feeling left out when people are talking experiences that they really can't identify with. What name would you think about naming such a group if not a support group?
Well we do hope to have offline groups start gradually. An AFF group, hobby and interest group, a proactive group, just ideas off the top of my head.
I think that "getting together" would work if the emphasis wasn't on primarily socializing. I love going to crops (where people get together to scrapbook), or other craft type gatherings, because everybody's heads are in their work, and if the conversation lulls or you *gasp* don't make eye contact, nobody thinks twice of it. Thinking back, there have been people in my life for whom being around them was nice, even blissful, and I'd bet it was because they were comfortable with silence, with just being there, and there was no pressure to engage in the sort of inane smalltalk that stresses me (and I'm sure many other AS people) out. Knowing that if one of us said something, it was because we wanted to say it, not because we felt unease with the silence.
Greetings,
What you need is a focus to keep people interested - and thats not easy when people have different (and often exclusive) interests.
If a support group had a range of activities, people could pick and choose what ones they wanted to participate in and make suggestions for what they wanted. The support element would be the fact that people are joining in these things together and makign friends.
Experiencing this problem with finding group at my paradoxical level at this time in my life. trying to figure out why i do what other people do and feel like i miss the point. currrently have support worker and psychiatrist who have not labelled but identified my social struggles. it had to be quantified in a needs assessment. YUK. but they seem to be ON TO IT and the doc is a bit aspie anyway.
certainly i find group activity that is physical without eye contact possible. the problem is usually the initial few sessions when i have to assimilate extra sensory information. and the amount of time spent in others company. i can do about two hours a day so far. i often chicken out. Its the first bit that's the problem. Already do some sport, with people in mental health area. Looking forward to tramping, wondering what problems others have encountered and what they do about them. The net is about the only place i find bearable acknowledgement.
becca
aspies can get DLA and incapacity or income support its just the forms for any benefits are not set up for our kind of dissability
to support my claim for DLA and incapacity benefit it took a year to get correct DLA but only 3 weeks to get assesesd on incapacity benefit.
the questions were totally useless so i added my own pc written notes to send with all benefit forms.
i have nowe benn on incapacity benefits for 3 years and DLA middle and low rate for 18 months.
have just been re assesed for benefits by DWP and have stated i dont need to sign off with doctor for another 5 years.
which takes away a lot of worry guilt and self doubt.
i donyt think i will ever work again,tried for over 16 yeatrs and the evidence from those jobs failures probably helped me get the benefits.
to get those benefits you really have to tell them in detail whats its like for you in a worse case scenario.
DWP do generally see Aspergers as a dissabilitiy but you need to tell them how it affects you,as no one gets dissability benefit for the dissability,you get it for how in impinges on daily life.
also even if on JSA you should be able on a proper diagnosis of aspergers get dispensation to only do certain work and not have to fulfill the JSA needs every 2 weeks.
good luck but fight for your benefits,i wish too the servbice to help me were also available
in my county they have set up an aspergers section under learning dissability teams,but so far all it is is talk and no action
regards,Paul
"Would you all agree that Autism and Asperger's Syndrome are the most ignored and disregarded conditions in society today? In many places we still are falling in-between the mental health services and the learning disability/Down's Syndrome services."
yes
"Those are often the criterion which social services and community groups judge that disabled individuals need to be in to gain access to support when living alone independently.
If you are not in those groups you receive limited help or nothing at all. Therefore many people with AS and even Autism are left to their own devices and are left to struggle. Often there are no support or social groups for individuals with Autism and Asperger's Syndrome, to help with applying for Incapacity Benefit, DLA and Tribunals. We are usually isolated and therefore, rather than be totally isolated, some of us go to groups that cater for individuals with mental illness or learning disablity/Down's Syndrome."
Many AS affected people don't believe they have a "disability" but they are capable of doing much. They only want the rest of the world to recognize that they may need help with their deficiencies. Employers should be encouraged or even forced to accomodate people with disabilities and AS so they can work.
"Then with benefits there are problems. We are viewed as too disabled to work by NT employers but too able to claim Incapacity Benefit and DLA. As a result of this, those with AS will remain on JSA and will be hassled and pressured into seeking any job going. The Benefits Agency will be ruthless to them in this situation. Why wouldn't they be? Someone with Asperger's Syndrome has been found fit and therefore available for work, just like Mr Neuro-typical of 2004, Fred Smith of 29 Acacia Avenue has been. But the 'any job' that someone with Asperger's Syndrome would be hassled into finding by the benefits agency isn't likely to be suitable for them as it would be for Mr Neuro-typical of 2004 Fred Smith, of 29 Acacia Avenue, and there is a strong chance it is unlikely to meet any of their needs as it would those that Mr Neuro-typical of 2004 Fred Smith, of 29 Acacia Avenue has. This wouldn't matter to the benefits agency, they would be ruthless with an unemployed person with Asperger's Syndrome just as they would with the unemployed Mr Neuro-typical of 2004, Fred Smith of 29 Acacia Avenue."
The fact is one needs an income to survive. Few people can live off the land in the bush in most western countries. It is not a problem that people with AS can not work, they can not make people hire them. They can apply for thousands of positions, go to interviews and still not get employment. If they do get employment, they will might have problems keeping their job. Most of this is due to economic issues and excess labour. For example, during war time (WWII) employers would hire anyone available and people were required to work. No one was getting fired for having AS. They simply wasn't anyone else available for work. This is why many factories hired women.
Employers might say "I just can't find anyone who is any good?" This usually means that they are not good at determining people's skills and accomodating them. They are paying too little and competent people are leaving. They fire people for any reason because they can be easily replaced. They give inadequate training. Their machinery/technology/procedures are flawed. Having worked for many years in Quality Assurance, I see this very often.
Would you agree that AS is an inbetween condition?"
NO. Because I don't see AS as a disability. I prefer to see it as a difference. Just as someone in a wheelchair is perfectly able to tend a shop but no one will hire them because they won't make accomodations for them such as: lower the cash till, provide reaching devices, help with carrying heavy items. But just because they could work is not a reason for them to get a hassle when they need a check to survive. The employers will not accomodate them.
I don't qualify for a disability pension for AS because I am married and spouse has an income and I don't have an official diagnosis. Accomodations could be made for people with AS but few employers will do that. So the problem is employer's attitudes.
Well I will reword that slightly Amy. They are "among" the most ignored conditions in society today. They are misunderstood and often there aren't support groups for individuals with them in many areas, who then either to go to MIND, which is for mentally ill people for Mencap for people with TLD/Down's Syndrome. It is often hard also when applying for DLA or Incapacity Benefit as many Welfare Rights Workers aren't aware fully of what they involve so they can't help you do the forms or put what is appropriate to get these benefits and help. Over half of people with AS are turned down for Community Care Assessments.
People with AS are often turned down for DSP but it is always worth appealing the decision, particularly if it's possible to get a psychologist's or psychiatrist's report detailing the ways in which the condition makes life more difficult eg. difficulties in speaking, misunderstanding information/need more time to learn etc.
I think employers should be expected to make more reasonable accommodations to allow more ASpies to get jobs but even so, there will be some who still won't be able to hold down work and they should be able to get DSP instead of being forced to look for jobs that they will never get.
Well, I do not think it is ignored...seems like everyone wants to fix it. It becomes an obsession for many people to "fix" their kid and expect me as a former special education teacher to do it and quick. Too many negatives for them, they lost family friends since that kid comes with them. Parents want their life back, so they jump onto the "Cure Autism Now" wagon. The effort put forth on that charity stops them from looking at more pragmatic help for their child. Thus, blaming drugs, vaccines and whatever efforts they exhaust instead of acceptance of their child and working on real things that work. If people would stop looking for a cure and look for care, but by the time they realize this the child is an adult thus needing more pragmatic services.
OK, this is my feeling, but I am a former Special Ed. teacher, mother of 4 kids (3 with ASD) and 2 adult siblings with ASD.
The point is the life that they want to "get back" was a fool's paradise. Doing the best for their aspie kid/s is now their life and surely blaming vaccines etc. is wasting time that could be better used to help their child in the here and now.
This might also be a radical idea but I will put it out there anyway. I hear of cases where parents have spent thousands and thousands of dollars on somewhat dubious treatments for their aspie children.
Now, had they put that money in trust for their children and then either built a granny flat onto their property for them to live in or to get them a unit nearby, it seems to me that would have been a much better use of the money.