Petition re Adult Services

[Canopus]

I think the second part of your question - how much - is sort of a redundant question. Society today cares little (and is encouraged to care little) for the underdog. Putting a price-tag on providing for their needs wouldn't make people willing to provide it, it would just give them more justification for pointing an accusing finger and shouting "why should I...?

 

This is on the wrong wavelength. I am aware that society is caring less and less for the underdog and fewer and fewer people want public money to be spent on the underdog. The crucial issue is that AS isn't an underdog condition because people with AS can become high achievers in contrast to people with certain other conditions who are unlikely to become high achievers. People with AS must therefore be presented as being an untapped resource of potential rather than just another downtrodden group of people after more money. This is why I am hesitant at lumping people with AS alongside people who are unlikely to be high achievers, including those with lower functioning autism, when it comes to getting support and resources.

[Mumble]

People with AS must therefore be presented as being an untapped resource of potential rather than just another downtrodden group of people after more money. This is why I am hesitant at lumping people with AS alongside people who are unlikely to be high achievers, including those with lower functioning autism, when it comes to getting support and resources.

:o Oooh, if I've understood you correctly, I am very very uneasy with this. I personally (and this is just a personal believe) don't think AS should be separated from autism. In fact I would advocate the removal of the AS label in favour of autism - but that's another story....

 

If I've got what you're saying, I'm uneasy thinking from my own perspective. My brother will always need 24 hour care, every single day for the rest of his life. That is, and always will be, more expensive than any support I would benefit from. It is very unlikely that he will ever give anything back to society, If I can get the right support, I believe I can. But just because I can. doesn't mean more should be spent on me. It's about basic human rights and decency, as much as anything else.

 

I still think we should be looking at needs and individuals, not particular diagnoses.

[baddad]

This is on the wrong wavelength. I am aware that society is caring less and less for the underdog and fewer and fewer people want public money to be spent on the underdog. The crucial issue is that AS isn't an underdog condition because people with AS can become high achievers in contrast to people with certain other conditions who are unlikely to become high achievers. People with AS must therefore be presented as being an untapped resource of potential rather than just another downtrodden group of people after more money. This is why I am hesitant at lumping people with AS alongside people who are unlikely to be high achievers, including those with lower functioning autism, when it comes to getting support and resources.

 

Sorry, bad turn of phrase... I meant underdog as 'disenfranchised' or devalued- not, as you've chosen to interpret it, as less able. And by my criteria, AS is an 'underdog' condition because autistic people are devalued and disenfranchised...

I'm not sure what a 'high achiever' is - I know to many it is someone who earns a great deal of money and achieves status either through that money or the acquisition of it. To others it seems to be the acquisition of knowledge for knowledges sake, without the wit to apply it in any other fashion than to highlight the lack of knowledge in others. Another type of status involves 'celebrity', but when people can become famous for appearing on some banal reality show and revealing themselves to be marginally less irritating than the other people on that show... To me, they seem fairly shabby sorts of elitism.

I know I'm in the minority, but to me a high achiever is someone who negotiates life without causing intentional harm to others and without making judgements about them based on peripheral and random abilities like the ability to 'do' maths or retain other types of information. People who accept other people for what they are without patronising them because it makes them feel better about themselves or bending over backwards to accommodate them for exactly the same kinds of reasons. I take real issue with the suggestion that people who 'do not have the potential to be high achievers' should be branded as a drain on resources ('after more money') or a group who anyone should be hesitant to be 'lumped together with'... They are exactly the kinds of negative judgements autistic people regularly face, and to see those types of views represented on a forum for autistic people really does rub me up the wrong way.

As I said, it's about education, not funding. Money doesn't change attitudes - otherwise there would be more 'nice' rich people about!

 

BD

Edited April 13, 2008 by baddad

[Cat]

Oooh, if I've understood you correctly, I am very very uneasy with this. I personally (and this is just a personal believe) don't think AS should be separated from autism. In fact I would advocate the removal of the AS label in favour of autism - but that's another story....

 

Mumble you and I share that 'another story' in my opinion it's one triad that is used being used to daignose two conditions, which either are or are not autism. Why are we splitting the spectrum in two simply because of a person's IQ? I know more than a few adults with AS now and most have degrees. A few even have their Masters Degrees but are unable to apply their knowledge because of the impact that AS has on their lives. I do not think that some people realise how disabling AS can be for an adult. Yes I know that there are some who manage to make their way through life without the need for support but they are few. 12% of the adult population with AS works what happens to those who do not and why are they not working?

 

Cat

Edited April 13, 2008 by Cat

[Canopus]

:o Oooh, if I've understood you correctly, I am very very uneasy with this. I personally (and this is just a personal believe) don't think AS should be separated from autism. In fact I would advocate the removal of the AS label in favour of autism - but that's another story....

 

From a technical perspective AS should be a subset of autism because it technically is. When it comes to providing services, there are considerable differences between what is commonly required for people with AS and HFA, and what is commonly required by people with lower functioning autism. My experience of things is that many adults and teenagers with AS are still being lumped together with people with lower functioning autism by service providers, resulting in services that are unsuitable for them and a lack of services that they really require.

 

If I've got what you're saying, I'm uneasy thinking from my own perspective. My brother will always need 24 hour care, every single day for the rest of his life. That is, and always will be, more expensive than any support I would benefit from. It is very unlikely that he will ever give anything back to society, If I can get the right support, I believe I can. But just because I can. doesn't mean more should be spent on me. It's about basic human rights and decency, as much as anything else.

 

I am not in any way implying that more money should be spent on people with AS and HFA than on people with certain other disabilities simply on the grounds of future economic potential. In an ideal situation, the amount of money spent on an INDIVIDUAL with a disability should be of a level to meet their requirements.

 

Money and support / services are two different things in practice.

 

I still think we should be looking at needs and individuals, not particular diagnoses.

 

This is the way I look at things, but the powers that be have a liking of putting people inside compartments. Sometimes they won't even put someone in the AS compartment unless they have an official diagnosis, and instead go and shove them in the learning disabilities or mental health compartment. When someone manages to get into the AS compartment they still might not be offered the services which meet their needs because there is quite a lot of diversity in people with AS, and the majority are not like Rain Man or from the story about a maths genius and a dog in the night. Customised tailor made services for disabled people are the holy grail we are looking for but are light years away at the rate things are going.

[Mumble]

From a technical perspective AS should be a subset of autism because it technically is.

Is it?

 

Sometimes they won't even put someone in the AS compartment unless they have an official diagnosis

Well surely that makes sense?

[baddad]

It's difficult for me to explain how my experiences have affected me. This was not one badly educated person, none of the people I have seen have helped in any way. The entire mental health system is hard-wired to help people who feel better if they get constant social contact, and they need to be educated to understand that there is a significant minority of people who actually require some time alone. Education, research, training courses and materials do cost money, and if funds are not set aside particularly for the purpose of educating mental health professionals about autism, it simply will not happen.

 

Hi tally - I agree with a great deal of what you're saying here about inappropriate responses lack of understanding etc, but still can't see the argument for 'ring-fenced' resources.

Certainly there does seem to be a greater degree of mental health issues among the autistic population, but does this arise as part of the condition itself or out of wider societies responses to it, and/or the impact in stress/on self-esteem etc of the uncertainty of those factors in tandem? I suspect it's probably the latter, but the 'mix' will be different for each individual so why try to fit them all in a box that's labelled 'autistic with mental health problems' that actually detracts from the need for holistic and individual assessment and intervention?

The assumptions you highlight about social contact are real, but the response overlooks another factor that is equally real: many autistic people do want wider social networks - they just want them with people who understand and accept them and allow them their own space too...

Elective isolation should be seen as a perfectly acceptable and reasonable life-style choice. People should be free to have networks as wide - or narrow - as they feel comfortable and happy with without feeling pressured to comply with some statistical 'norm'. But if that isolation is also the cause of much of their unhappiness then how do you resolve it?

I'm not saying that was the problem (or part of the problem) for you - I couldn't possibly know - but it does seem to be a big part of it for others...

 

Again, to me, the answer lies in education and understanding rather than ring-fenced funding. While training and understanding does cost money, it's not all about money. It's about changing attitudes and perspectives. You could throw billions at a problem, but if the people dealing with it continue to deal with it ineffectively you just have a more expensive problem. We need better health services, and we need better mental health services, but we need them for everyone who has need of them. Why educate/train people to have a better understanding of autism? Why not, using the existing, framework, educate/train people to look more closely at the needs of the individual and try to understand him or her? you achieve the same result, but in a way that benefits everyone walking through the door rather than just those lucky (and i use the term ironically) people who happen to be the specialists 'topic of the year'.

Ring-fencing, by definition, improves the situation for the group being targeted but is detrimental to every other person outside of that group who's funding has to come out of the same pot. And it is the same pot even if the pot has different points of access and different labels pinned over those points of access. In every case, you're robbing Peter to pay Paul, and Paul doesn't deserve it

 

[mossgrove]

I will not be signing the petition.

 

While I sypathise with the petitioners intentions, I can't agree that Aspergers should be ring-fenced from other forms of provision for Autism and related conditions. The differences between Aspergers, HFA and Autism is a regular hot potato on Autism forums the world over, and I am not convinced that the boundaries interms of the condition itself and individuals needs is as clearly drawn as the original petitioner implies.

 

Ring fencing wouldn't work in practice either. AS ring-fenced money would end up being used for infrastructure spending that would benefit all people with Autism and related conditions, or patients in general. Even if it did work, would we really want someone with Autism/HFA being denied access to a service because he/she does not have Aspergers?

 

 

 

Simon

Edited April 14, 2008 by mossgrove

[Mumble]

many autistic people do want wider social networks - they just want them with people who understand and accept them and allow them their own space too...

*nods*

 

Elective isolation should be seen as a perfectly acceptable and reasonable life-style choice. People should be free to have networks as wide - or narrow - as they feel comfortable and happy with without feeling pressured to comply with some statistical 'norm'. But if that isolation is also the cause of much of their unhappiness then how do you resolve it?

I think it's really tricky. My isolation isn't elective for the most part - sure sometimes, when overloaded (ironically often as a result of non-isolation ) I do want just my own company - but I do want not to be as isolated as I am - particularly isolated among people - that to me is the hardest part of isolation. The trouble is, some NTs, who may be very well meaning, suggest ways round isolation in terms that make sense to them, whereas these may fill me with dread and make me want to isolate.

 

I don't know the solution, I'm just adding my experience.

[Karen A]

From a technical perspective AS should be a subset of autism because it technically is. When it comes to providing services, there are considerable differences between what is commonly required for people with AS and HFA, and what is commonly required by people with lower functioning autism. My experience of things is that many adults and teenagers with AS are still being lumped together with people with lower functioning autism by service providers, resulting in services that are unsuitable for them and a lack of services that they really require.

 

 

 

I am not in any way implying that more money should be spent on people with AS and HFA than on people with certain other disabilities simply on the grounds of future economic potential. In an ideal situation, the amount of money spent on an INDIVIDUAL with a disability should be of a level to meet their requirements.

 

Money and support / services are two different things in practice.

 

 

 

This is the way I look at things, but the powers that be have a liking of putting people inside compartments. Sometimes they won't even put someone in the AS compartment unless they have an official diagnosis, and instead go and shove them in the learning disabilities or mental health compartment. When someone manages to get into the AS compartment they still might not be offered the services which meet their needs because there is quite a lot of diversity in people with AS, and the majority are not like Rain Man or from the story about a maths genius and a dog in the night. Customised tailor made services for disabled people are the holy grail we are looking for but are light years away at the rate things are going.

 

 

I don't think that it is just the powers that be that have a liking of putting people inside compartments.

Our family happen to be recieving excellent support from Camhs from specialists who traditionaly do not provide support for individuals with AS but who don't believe in putting people in boxes based on one diagnosis.

I pressume that under the system where individuals with AS are provided with support by a specific specialist team and not general mental health services this would be deemed inapropriate.

The idea that individuals with AS should be supported purely by specialists in AS is not logical.

An individual with depression who has AS needs input from a specialist in depression.

If a person who is blind breaks a leg they do not see an ophthalmic surgeon.Karen.

[Canopus]

I think it's really tricky. My isolation isn't elective for the most part - sure sometimes, when overloaded (ironically often as a result of non-isolation ) I do want just my own company - but I do want not to be as isolated as I am - particularly isolated among people - that to me is the hardest part of isolation. The trouble is, some NTs, who may be very well meaning, suggest ways round isolation in terms that make sense to them, whereas these may fill me with dread and make me want to isolate.

 

Reminds me of my residential school. There weren't many places where kids could go and isolate themselves when overloaded for an hour or so. Meltdowns and violent temper tantrums regularly happened.

[charliesvoice]

have to agree with mossgrove on this! i won't be signing either.

[Laz]

Hi everyone.

 

I haven't had the time to post on here in quite awhile but I just read through this post with interest given that I recently wrote my final assignment on autism transition for my Learning Disability Nurse trainning. I am someone with AS diagnosis myself and I tried to make an argument that Learning Disability nurses should be the profession to become primarily involved in AS and ASD provision given that the skills we have would be easily adaptable to a service. Ive recently written a small peice for the NAS for their May issue of Communication talking about my experiances and promoting the idea that other people with AS should consider this sort of work as a career option who are coming to the end of their secondary education and/or a-levels.

 

There is an adult service for AS based in Liverpool that consists of a Speach and language therapist and two nurses who have Learning Disability and mental health nursing registration as well as a clinical assistant. They sadly only cover the are of Liverpool centre at the moment and no trust is really interested in extending such an idea. Though Sheffield recently hinted in its consultation document for "Better services for autism" That they want to construct small autism specific teams to deal with adults out there who do not fit the bill that would let them access learning disability services.

 

If theres any interest I can post up my 4000 word assignment? I can always edit out all the background riff raff and Harvard referancing so its an easier read. Would there be any interest in doing so?

 

I shall return in the morning as im off to do a night shift now but thankyou for an interesting read.

[Mumble]

I tried to make an argument that Learning Disability nurses should be the profession to become primarily involved in AS and ASD provision

If that were to happen, I would fight and fight hard not to have such provision put on me, even if I needed support. I'm actually quite angry and saddened at this and really quite surprised at it coming from an AS individual. Autism is not a learning disability and to have LD nurses involved would perpetuate the idea that it is. I'm really sad at this suggestion.

[Tally]

The problem with not ring-fencing, is that the money gets spent in the wrong place. If you just give money, it could get spent on things that aren't important. If you specify what this money is for, then it has to be spent on that.

[Mumble]

If you specify what this money is for, then it has to be spent on that.

But that's exactly the problem - we don't know what money should be spent on and support for autism, particular support for high functioning individuals living semi-independently/independently is less about finances and more about understanding and acceptance.

 

I get a specified amount of funding for my support which is actually quite substantial - yet it is not spent because no ones really clear what the support I need should look like. The best support I get is totally free - it's the understanding of my supervisor and other academics who understand some of my issues and help me to be included. That's the best type of support - acceptance.

[Cat]

Certainly there does seem to be a greater degree of mental health issues among the autistic population, but does this arise as part of the condition itself or out of wider societies responses to it, and/or the impact in stress/on self-esteem etc of the uncertainty of those factors in tandem? I suspect it's probably the latter, but the 'mix' will be different for each individual so why try to fit them all in a box that's labelled 'autistic with mental health problems' that actually detracts from the need for holistic and individual assessment and intervention?

 

I think that we will see an even larger number of autistic adults presenting with mental health issues in the years to come. My take on this is because there is an ever growing number of autistic children being forced through a system which is not coming close to meeting their needs. Although much of this can be put down to lack of understanding and training, even when training has been given there is also a lack of acceptance on the part of some to accept that AS is a bona fide condition. Many still see a naughty child seeking attention - or yet again bad parenting. CAMHS are already reporting an increase in the number of autistic children being referred to them. Again purely my take but if the needs of a person are not being met or are being blatantly ignored then we can expect to see mental health issues riding in tandem with the autism. We can not ask a child or an adult to spend their lives finding coping strategies while we also expect them to find a job, hold it down, live independently and have a good social life, if there is no one out there for them to assist them with their strategies and coping mechanisms.

 

I am not the biggest NAS fan on the planet but I do think that their report ?Ignored or Ineligible? spoke volumes about the way in which autistic people, those with AS especially, are treated.

 

Cat

[Canopus]

I think that we will see an even larger number of autistic adults presenting with mental health issues in the years to come. My take on this is because there is an ever growing number of autistic children being forced through a system which is not coming close to meeting their needs. Although much of this can be put down to lack of understanding and training, even when training has been given there is also a lack of acceptance on the part of some to accept that AS is a bona fide condition. Many still see a naughty child seeking attention - or yet again bad parenting. CAMHS are already reporting an increase in the number of autistic children being referred to them. Again purely my take but if the needs of a person are not being met or are being blatantly ignored then we can expect to see mental health issues riding in tandem with the autism. We can not ask a child or an adult to spend their lives finding coping strategies while we also expect them to find a job, hold it down, live independently and have a good social life, if there is no one out there for them to assist them with their strategies and coping mechanisms.

 

Why an increase in the number of autistic adults presenting with mental health issues in the years to come? Remember that in the days when I was at school AS was unknown and services for autism much worse than today. The system didn't meet the needs of kids with AS or autism back then and was probably worse than today's system.

[Laz]

If that were to happen, I would fight and fight hard not to have such provision put on me, even if I needed support. I'm actually quite angry and saddened at this and really quite surprised at it coming from an AS individual. Autism is not a learning disability and to have LD nurses involved would perpetuate the idea that it is. I'm really sad at this suggestion.

 

Well you are getting hung up on the name and the stigma attached to "learning disability" just because of the title does not mean that such a professional is unable to help you. In actual fact they probably would be far more useful to you then a social worker potentially and the primary skills of the job is around communication and supporting people under the inclusion philosophy originating from the social model of disability (which is getting a bit old n cranky now but its still a robust approach) Its not like the nurses you see on the TV or in your local hospitals, we don't wear uniform we don't have trainning focused on all the practical stuff that you assume all nurses do.

 

Infact if i were to reverse your statement the fact you do not qualify as having a learning disability because your IQ is not below a certain level is used as an excuse to deny you such services that you seek. So really I would ignore the title of the professional I might as well be that Advocate you were talking about or be called an autism nurse. Because at the end of the day the skills this profession has are relevant to you and what you require.

 

So let me re-assure you that fundamentally you are getting hung up on a name. It is a confusing title to begin with begin with. Its a small area, only 4% of the entire nurse workforce. Not everyone has heard of it nor is familair with what we do. We don't neccesarily work with people who have learning disabilities to begin with, we can be in spinal injury units or in prisons and the mental health services.

[Laz]

But that's exactly the problem - we don't know what money should be spent on and support for autism, particular support for high functioning individuals living semi-independently/independently is less about finances and more about understanding and acceptance

 

Yes that is actually the entire crux of problems we have, not just here in the UK but around the world. We do not have a service framework model based on the best way of getting improvements in life chances and abilities for autism or AS. We actually have data to show what works best in for preparing children and teenagers the best chances, ironically alot of this data shows that the low IQ "low functioning" (I hate that term functioning, its human not a robot) individuals are the ones who by far make the greatest improvement with the right support and the "High functioning" have a distorted outcome were they under achieve or fail to get a foothold in independent living in the first place.

 

I would say a potential model has to look at two groups if we are to simplify things down to the fundamentals.

 

You have people with apparent problems on the surface, they attain low IQ may have problems communicating verbally get picked up usually sooner rather than later. The solutions require potentially a lot of work from parents, education and healthcare to help the person get the most they can out of life

 

In contrast you have people who's problems are hidden on the surface. They attain average or more IQ levels, their verbal ability to communicate while unusual is not given much cause for concern at an early age. The solutions, potentially, are more straight forward then the first group but are harder to recognise. Because the problems are most likely going to go unrecognised into adulthood you loose valuable time in which interventions could of helped to give them a stronger foundation for adulthood. When you have adults in such situations with a history that has lead to the person becoming known to mental health or whatever service they encounter it becomes quite complicated. You want to minimise the risk and the numbers of people who end up in such situations.

[baddad]

Actually, I don't have a problem with the term 'learning disability' associated with autism, I just have problem with the perceptions of what that term means...

 

My son has a huge disability in terms of learning social cues, expectations, behaviours and in 'reading them' and transfering that knowledge to his own interactions. This actually impacts on him in ways that give him a 'learning disability' in other, more traditional ways too, because he doesn't make the connections and inferences that other children do and needs modifications in teaching methods to help him overcome those deficits.

He does have a learning disability, it's just not the same type of learning disability.

The real difficulty lies in the associations generally made with that term, not with the 'description' itself - which is, in context, perfectly apt.

 

I couldn't really give a monkey's what the people who can help Ben call themselves (within reason) just so long as they do help him. Sadly, there aren't many about that really do that well, and the ones that do have all sorts of inappropriate (in clinical terms)titles attached to their names, like 'dad' and 'headmistress' and 'Lewis C'... The people who should appear on that list (Dr, Ed Psych, Paeadiatrician, S&LT therapist etc) often don't - and that's wrong

 

[Cat]

Why an increase in the number of autistic adults presenting with mental health issues in the years to come? Remember that in the days when I was at school AS was unknown and services for autism much worse than today. The system didn't meet the needs of kids with AS or autism back then and was probably worse than today's system.

 

Canopus I have no idea how old you are. I know that like me you are no teenager

 

The difference between 'then and now' is that when my Uncle and my cousin were attending schools the schools were much smaller and much more structured. Both went to what was then called a secondary modern school, although both are highly intelligent, which was much smaller than today's comprehensive schools. There was not the pressure to meet targets that we have placed on children today. They were not forever being tested and being pushed to meet their potential and quite specific levels of attainment. There was not the interference by society as to how your child was socializing, so if they wanted to come home and stay in that was OK. Now it's all about forcing younger people with AS to be social even if that is not the right thing for them. They talk about emotional wellbeing without even beginning to understand that sitting in a classroom for 6 hours a day with children that you neither understand and who do not understand you, is probably doing more harm to their emotional wellbeing then good. Both my Uncle and cousin actually made it through the school system without too much bother, although neither one of them actually liked school. They both fell apart at the seams when they had to embark on a working life which saw a daily need for change. I personally think that the lack of diagnosis then probably made it easier for my Uncle and Cousin because they were accepted for what they were and who they are. These days it appears to be a mission for some schools to normalize anyone who has a diagnosis of AS and not to let them be themselves. Also there were not as many 2 parent working families and we were not all being told by the government that we could have it all - so family life was totally different to the way it is toady.

 

There is already an increase of numbers of autistic children being referred to CAMHS - which is very much a postcode lottery with some professionals also believing that the way forward is enforced socialisation for these children.

 

Cat

[Cat]

Yes that is actually the entire crux of problems we have, not just here in the UK but around the world. We do not have a service framework model based on the best way of getting improvements in life chances and abilities for autism or AS. We actually have data to show what works best in for preparing children and teenagers the best chances, ironically alot of this data shows that the low IQ "low functioning" (I hate that term functioning, its human not a robot) individuals are the ones who by far make the greatest improvement with the right support and the "High functioning" have a distorted outcome were they under achieve or fail to get a foothold in independent living in the first place.

 

I would say a potential model has to look at two groups if we are to simplify things down to the fundamentals.

 

You have people with apparent problems on the surface, they attain low IQ may have problems communicating verbally get picked up usually sooner rather than later. The solutions require potentially a lot of work from parents, education and healthcare to help the person get the most they can out of life

 

In contrast you have people who's problems are hidden on the surface. They attain average or more IQ levels, their verbal ability to communicate while unusual is not given much cause for concern at an early age. The solutions, potentially, are more straight forward then the first group but are harder to recognise. Because the problems are most likely going to go unrecognised into adulthood you loose valuable time in which interventions could of helped to give them a stronger foundation for adulthood. When you have adults in such situations with a history that has lead to the person becoming known to mental health or whatever service they encounter it becomes quite complicated. You want to minimise the risk and the numbers of people who end up in such situations.

 

 

Absolutely and totally agree with you Laz you have summed it up so well.

 

Cat

Edited April 15, 2008 by Cat

[Karen A]

Canopus I have no idea how old you are. I know that like me you are no teenager

 

The difference between 'then and now' is that when my Uncle and my cousin were attending schools the schools were much smaller and much more structured. Both went to what was then called a secondary modern school, although both are highly intelligent, which was much smaller than today's comprehensive schools. There was not the pressure to meet targets that we have placed on children today. They were not forever being tested and being pushed to meet their potential and quite specific levels of attainment. There was not the interference by society as to how your child was socializing, so if they wanted to come home and stay in that was OK. Now it's all about forcing younger people with AS to be social even if that is not the right thing for them. They talk about emotional wellbeing without even beginning to understand that sitting in a classroom for 6 hours a day with children that you neither understand and who do not understand you, is probably doing more harm to their emotional wellbeing then good. Both my Uncle and cousin actually made it through the school system without too much bother, although neither one of them actually liked school. They both fell apart at the seams when they had to embark on a working life which saw a daily need for change. I personally think that the lack of diagnosis then probably made it easier for my Uncle and Cousin because they were accepted for what they were and who they are. These days it appears to be a mission for some schools to normalize anyone who has a diagnosis of AS and not to let them be themselves. Also there were not as many 2 parent working families and we were not all being told by the government that we could have it all - so family life was totally different to the way it is toady.

 

There is already an increase of numbers of autistic children being referred to CAMHS - which is very much a postcode lottery with some professionals also believing that the way forward is enforced socialisation for these children.

 

Cat

 

 

Cat.I am no youngster.Sorry I don't agree with the theory that things were any better in the days of secondary modern schools.

My brother sat the 11 plus and I gather it was as stressful then just as SATS are now.

He had difficulties with handwriting which were not recognised.But was also one of the brightest in a school where there were high expectations and he was pushed to do well.

You are right that there was no interference...unfortunately there was no support either.

He committed suicide on the eve of sitting one of his O levels because he could not cope.

So sorry I don't think things were better then...at least somone has recognised that Ben has SEN.Karen.

[Cat]

Cat.I am no youngster.Sorry I don't agree with the theory that things were any better in the days of secondary modern schools.

My brother sat the 11 plus and I gather it was as stressful then just as SATS are now.

He had difficulties with handwriting which were not recognised.But was also one of the brightest in a school where there were high expectations and he was pushed to do well.

You are right that there was no interference...unfortunately there was no support either.

He committed suicide on the eve of sitting one of his O levels because he could not cope.

So sorry I don't think things were better then...at least somone has recognised that Ben has SEN.Karen.

 

That is shocking and very sad and of course you are correct no diagnosis also meant no support. Although both of my sons have a bona fide diagnosis and one is also now severely visually impaired it still equalled and equals no support for either of them ? which is why I opted to home educate them.

 

It is now 5 years since my elder son seen anyone at all medically except from our GP. He was signed off from child and family just before his 16th birthday. This does not mean that he has not needed to see anyone, just that he does not tick the right boxes even to see someone because of his great IQ. He does not appear to fall within anyone's remit.

 

You are right things probably were not better for un-diagnosed children because although my Uncle and cousin made it through school un-diagnosed and un-supported, their adults lives have been quite horrendous with my cousin now spending most of his life locked away in a mental hospital. So really nothing has changed for many of us because even with the diagnosis these children, not only mine, can be left un-supported and are still having huge issues coping.

 

How do we put that right? Or can we?

 

Cat

[Tally]

I think that Learning Disability services tend to be the best source of support. In some regions AS is catered for under the Mental Health team, and in others by the Learning Disability team. It seems that people receive the most, and most appropriate support where the support is provided by the Learning Disability team.

 

If you look at advocacy and support groups for all kinds of different conditions, you will find that everyone believes their condition is somehow different to others categorised within the same group. I don't think it's inappropriate to categorise autism as a learning disability, even though it is different to other learning disabilities.

[mossgrove]

Sorry, but I don't share the rose-tinted view of Secondary Modern schools.

 

We are unfortunate enough to have grammar schools in parts of our our area still, and this means that for children in these areas, if you haven't made it to the grammar school you are not really important. The theory behind a Secondary Modern is a different path for the less academically able, the reality is second best of everything including resources, accomodation, funding, quality of staff and self-esteem.

 

Any system that labels people as failures at 11 has nothing to recommend it. Too many people concerntrate on the upsides of Grammar schools for the socially and academically able and ignore the downsides for everyone else.

 

Simon

[Karen A]

Why an increase in the number of autistic adults presenting with mental health issues in the years to come? Remember that in the days when I was at school AS was unknown and services for autism much worse than today. The system didn't meet the needs of kids with AS or autism back then and was probably worse than today's system.

 

There is likely to be an increase in the number of autistic adults presenting with mental health issues in the years to come for two reasons.

There are more children being Diagnosed with AS now because Diagnosis is better.So if those children go on to have mental health issues the Diagnosis will be noted...whereas previously those children would probably have been given a different label.

There are adults now with an AS Diagnosis which is a recent change because AS was not recognised as a Diagnosis until relatively recently so it stands to reason that the number of adults with AS presenting with mental health issues will increase even if a small proportion of adults require mental health services.Karen.

[Mumble]

Any system that labels people as failures at 11 has nothing to recommend it. Too many people concerntrate on the upsides of Grammar schools for the socially and academically able and ignore the downsides for everyone else.

*nods like a nodding dog going over a speed-hump*

 

Totally. Exactly. Even if you have just one grammar/otherwise-selective school in an LEA or neighbouring LEA, you totally change the mix of pupils in other schools, not least in terms of their self-esteem and attitudes and the attitudes of those teaching them. Children mature at very very different rates - you simply cannot say what someone will be as an adult at the age of 11. I was told I probably wouldn't finish secondary school, I wouldn't get any GCSEs and I didn't deserve to be in a number of lessons - some I got kicked out of (French (in two weeks!!!! ) and PE), others the teachers didn't put any effort into supporting me - and yet I am now a qualified teacher and doing a PhD on a studentship.

[Mumble]

I don't think it's inappropriate to categorise autism as a learning disability

It is so long as public perceptions of learning disabilities don't change. BD is entirely correct in what he says, and AS/HFA can result in a need for learning to be approached differently, but the majority of the public conceive of learning disability as low-IQ and hence low expectations. I have to fight hard enough as it is to be recognised. Don't make something more of my differences by applying a difficulty that doesn't actually exist. I will not lower my expectations of myself and what I can be just because of my HFA diagnosis. I will not be told that there are certain careers that are more suitable to me because of my diagnosis. I have as much right as anyone to at least try to be what I want to be.

[Laz]

My experiance of education certainly was not impressive. My primary school tried their best to get sent off into special needs education, which lead to my diagnosis in the first place. From a personal perspective I fail to see what mainstream education taught me besides reading and writing that did not require extra tuition at secondary school to make up for failures at primary level. Were I not fortunate to have parents who earned a sufficient amount to afford that time outside of school to catch up I don't know where I would of ended up.

 

It has left me feeling that if i ever start a family that i would consider home schooling rather than subject them to a system that i personally feel does not prepare you for adulthood at all. I feel the philosophy of the education system needs to be re-built from the bottom up not simply little adjustments or re-arrangements of the deck chairs of the Titanic that previous governments and the current one seem to employ.