Autism discussion

[Up_Tilt_390]

Moderators note: split from Transgender sporting question

I am now dreading the day when the equality brigade are done with Transgendered people and potentially move on to Autistic people next. We've suffered enough knowing that Boris Johnson is Foreign Secretary, so we don't need to claim to be represented by another of group of agenda-driven clowns who will never understand our issues. I was having a discussion earlier where I was told on the subject of abortion that no uterus means no opinion, which I disagree with anyway because while the man's opinion shouldn't override the woman's in such a case, you can't just shut them down cause of their sex. It's hypocritical and it's discriminatory.

I'm not sure I ever brought this up before, but at times I've felt like I was born into the wrong species! I've never been one to relate to a lot of people very well, and these days I identify more with cats than I do people. Don't forget about the book and old saying that "all cats have Asperger's Syndrome". So on this basis, could I in theory say that I wasn't an Autistic person but rather just someone who was meant to be a cat and was born into the wrong species? If you think I sound crazy then please explain why before I go off the deep end in the future, and if you think I just being stupid to make a mockery out of transgender people, then in this case you are wrong, so please don't get offended on either your behalf or someone else's.

 

[Bromley boy]

I am now dreading the day when the equality brigade are done with Transgendered people and potentially move on to Autistic people next. We've suffered enough knowing that Boris Johnson is Foreign Secretary, so we don't need to claim to be represented by another of group of agenda-driven clowns who will never understand our issues. I was having a discussion earlier where I was told on the subject of abortion that no uterus means no opinion, which I disagree with anyway because while the man's opinion shouldn't override the woman's in such a case, you can't just shut them down cause of their sex. It's hypocritical and it's discriminatory.

Absolutely agree.

The local authority trying to shoe horn my (quite severely) autistic brother into a mainstream secondary school using “equality” as a justification shows what can happen. Of course what they really wanted to do was save money.

They failed in the end, but it was a battle.

 

[Up_Tilt_390]

The local authority trying to shoe horn my (quite severely) autistic brother into a mainstream secondary school using “equality” as a justification shows what can happen. Of course what they really wanted to do was save money.

They told me that I would've been fine in a mainstream school from a young age. Turns out it was quite a more difficult ride than that, and I only just barely made it through around fifteen years of education with very little help through most of it. The fact they were trying to force your brother into a mainstream school is nothing surprising to me, and if I'm honest I would be surprised if it was anything but to save money. It costs quite a bit to put someone in a special school, and it's very hard for parents to get their children in.

 

[Bromley boy]

They told me that I would've been fine in a mainstream school from a young age. Turns out it was quite a more difficult ride than that. The fact they're forcing your brother into a mainstream school is nothing surprising to me, and if I'm honest I would be surprised if it was anything but to save money. It costs quite a bit to put someone in a special school, and it's very hard for parents to get their children in.

I can imagine, and I sympathise. Fortunately for my brother our mother had the resources and knowledge to successfully fight it, and would have been able to send him privately if necessary. Many are not so fortunate of course.

The lack of provision for autistic people in this country is an absolute disgrace.

 

[Up_Tilt_390]

I can imagine, and I sympathise.

The lack of provision for autistic people in this country is an absolute disgrace.

Indeed. If you have much else to speak of in this regard then you can send me a PM. I'd be glad to talk more about it if you wished.

 

[ComUtoR]

The lack of provision for autistic people in this country is an absolute disgrace.

I am mostly frustrated with the glacial pace of the system. At primary age he was pretty much deep in trouble every day and already sliding out the system before he was diagnosed. Even then the Head Teacher stated that 'he will grow out of it' Now he is at secondary the problems still occur and it takes months and months for anything to even move. He is bright, as Autistic people tend to be, but still sliding out the bottom of the system and even though he has taken his end of year exams they are still only just discussing him getting into a special program to help during exams !

 

[Bromley boy]

I am mostly frustrated with the glacial pace of the system. At primary age he was pretty much deep in trouble every day and already sliding out the system before he was diagnosed. Even then the Head Teacher stated that 'he will grow out of it' Now he is at secondary the problems still occur and it takes months and months for anything to even move. He is bright, as Autistic people tend to be, but still sliding out the bottom of the system and even though he has taken his end of year exams they are still only just discussing him getting into a special program to help during exams !

Yep - absolutely terrible. They should be ahead of the curve on making this kind of provision in 2018. How old is he again?

By the sounds of things my bro is quite a few notches further down the spectrum than your son. He could never have done mainstream school. It’s crazy that it was ever suggested as a possibility.

He’s bright too, can talk at length about obscure tribes from aincient history (who exactly were the Myceneans anyway?) but, aged 26, he can’t tell the time, can’t tie shoe laces and will never be able to live independently.

We love him, and his random chat, anyway . His autism, fundamentally, is just part of who he is.

 

[ComUtoR]

15 and he is on the edge. He struggles and has many incidents but just about gets along. He is certainly the weird one at school. Hard to make friends, easily led, socially awkward etc. you know the score. He is predicted *A/B in his GCSE's but all the Teachers have said that he will never get the grade as he won't pass the exams ! Hopefully this program he may get put in will help but because he is just on the edge he may not qualify. However; they will assess him over the next few years.....

He frustrates the crap out of me some days but yep, that's who they are and I wouldn't have it any other way.

He has his regular appointment next week and we are still filling out the same forms each time and will no doubt have the same set of questions. Rinse repeat in 6 months.

*except for an outright U in RE but as you are also no doubt aware. If they are not engaged in the subject it becomes impossible to tell teach them :/

 

[Geezertronic]

I share a similar experience with my 15 year old, even down to the comment on RE

 

[mikeg]

I'm not sure where you are going with the equalities brigade comment. As an autistic person myself (among other things) I am glad I got put in mainstream education, albeit with almost constant one on one support which I am not quite sure would happen nowadays. Put simply, I wouldn't have had many opportunities had I gone to a special school for autistic people, certainly not gone to uni for example. The possibility was looked into. Maybe standards have changed. That said for some specialist education is the only workable option. My biggest thing I hold against my parents is that unlike my neurotypical brother I was never entered into the 11+ exams for the semi local grammar school. Why should autistic people be denied the opportunity available to others?

 

[Bromley boy]

That said for some specialist education is the only workable option.

This is the point.

Of course for high functioning autistics such as yourself a special school would not be the right place at all, but for people further down the spectrum it is the only sensible option.

Of course mainstream education is far cheaper so it is very tempting for local authorities to lump all autistic people together, using equality as an excuse, in order to avoid paying for special provision for those who do need it.

 

[ComUtoR]

Of course for high functioning autistics such as yourself a special school would not be the right place at all, but for people further down the spectrum it is the only sensible option.

Sensible for who ?

From an anecdotal point of view. I know someone who fought tooth and nail to keep their daughter in mainstream school. She struggled in numerous ways but slowly dropped behind. She was put into a 'special school' and at that point, failure was the only possible outcome. She totally tanked. My ex works in schools and again anecdotally, her experience is directly in the negative.

It can have a detrimental effect as some special schools are just a dumping ground to get the problematic part of society out of sight and out of mind. My Son has almost been excluded twice and one was while he was in Primary !! The SENCO at his current school wasn't even aware he was under him !!! As with most things I am just unsure what is the right thing or which is the better option. As I mentioned previously, it takes so long to make assessments and make decisions that the child or person involved slips slowly out the bottom.

I'm sure there are some very good places out there and BB is right in that money really does talk.

 

[Bromley boy]

Sensible for who ?

From an anecdotal point of view. I know someone who fought tooth and nail to keep their daughter in mainstream school. She struggled in numerous ways but slowly dropped behind. She was put into a 'special school' and at that point, failure was the only possible outcome. She totally tanked. My ex works in schools and again anecdotally, her experience is directly in the negative.

It can have a detrimental effect as some special schools are just a dumping ground to get the problematic part of society out of sight and out of mind. My Son has almost been excluded twice and one was while he was in Primary !! The SENCO at his current school wasn't even aware he was under him !!! As with most things I am just unsure what is the right thing or which is the better option. As I mentioned previously, it takes so long to make assessments and make decisions that the child or person involved slips slowly out the bottom.

I'm sure there are some very good places out there and BB is right in that money really does talk.

Sensible for kids who really could not function in a mainstream school (and it would probably be hell for them to try).

My brother is a good example of this - absolutely no way he would have benefitted from being put through GCSEs etc when what he really needed was to learn life skills and social skills.

He’s decidedly towards the lower functioning end of the autistic spectrum (and has one or two other difficulties, including dyspraxia), and it was quite clear cut in his case. He went to a mainstream primary and was a very long way behind his contemporaries by the end of primary school, hence the battle to get him into a special secondary. The LA didn’t want to pay for it was the sticking point - all the relevant professionals agreed that would be best place for him. I accept there is a big “grey area” for higher functioning autistics, and some for whom a special school would be completely inappropriate. These cases need to be judged on their own merits, but this judgement should focus on what is best for the child concerned rather than money.

Special schools are more expensive per child than mainstream due to smaller class sizes, greater supervision etc. so I would have thought purely based on the financial side of things local authorities would try to keep people in mainstream who shouldn’t be there, rather than putting people into special schools unnecessarily.

 

[ComUtoR]

What my main impression has been is that Mainstream schools just do not want the responsibility or have any incentive (even the payment they do receive isn't worth the effort and is misused tbh) to make any effort with any kid with some form of difficulty 'fitting in'

It's been very soul destroying.

 

[Qwerty133]

15 and he is on the edge. He struggles and has many incidents but just about gets along. He is certainly the weird one at school. Hard to make friends, easily led, socially awkward etc. you know the score. He is predicted *A/B in his GCSE's but all the Teachers have said that he will never get the grade as he won't pass the exams ! Hopefully this program he may get put in will help but because he is just on the edge he may not qualify. However; they will assess him over the next few years.....

He frustrates the crap out of me some days but yep, that's who they are and I wouldn't have it any other way.

He has his regular appointment next week and we are still filling out the same forms each time and will no doubt have the same set of questions. Rinse repeat in 6 months.

*except for an outright U in RE but as you are also no doubt aware. If they are not engaged in the subject it becomes impossible to tell teach them :/

The problem is that there simply isn't any suitable specialist provision for someone with predicted GCSE grades even close to Bs. As someone who went to a special school I found that the majority of staff, especially those in management, seem to presume that anyone autistic cannot cope with making any choices for themselves, are completely incapable of even the simplest of everyday tasks and will struggle to achieve a sufficient number of GCSEs for it to be worth employing suitably qualified teachers for even core subjects.

 

[Bletchleyite]

The problem is that there simply isn't any suitable specialist provision for someone with predicted GCSE grades even close to Bs. As someone who went to a special school I found that the majority of staff, especially those in management, seem to presume that anyone autistic cannot cope with making any choices for themselves, are completely incapable of even the simplest of everyday tasks and will struggle to achieve a sufficient number of GCSEs for it to be worth employing suitably qualified teachers for even core subjects.

Which is of course drivel - quite a lot of people with higher functioning autism (used to be called Aspergers) are very intelligent and do very well at school - not least in part due to not spending time socialising but spending it on schoolwork instead.

This country is terrible at dealing with anything to do with mental health.

 

[Bromley boy]

What my main impression has been is that Mainstream schools just do not want the responsibility or have any incentive (even the payment they do receive isn't worth the effort and is misused tbh) to make any effort with any kid with some form of difficulty 'fitting in'

It's been very soul destroying.

Yes I can imagine.

I see where you are coming from re. special schools. While I disagree that they are a “dumping ground” (they are quite the opposite in the sense that they cost more per place than mainstream) they do group a range of complex learning difficulties and “special needs” together. They aren’t going to be suitable for kids with a realistic shot at higher education/university etc.

As such they aren’t going to be appropriate for autistics at the higher functioning end at the spectrum.

 

[Bromley boy]

Which is of course drivel - quite a lot of people with higher functioning autism (used to be called Aspergers) are very intelligent and do very well at school - not least in part due to not spending time socialising but spending it on schoolwork instead.

This country is terrible at dealing with anything to do with mental health.

Yes indeed. Someone like that probably wouldn’t be at a special school in the first place as it would be wrong for them.

The autistic spectrum ranges from people completely without speach, through to people who get PhDs and go on to become leaders in their fields. As someone who works in IT I’m sure you have a few colleagues who are on the spectrum!

It often, as in my bro’s case, occurs alongside other difficulties and can be profoundly disabling at the lower functioning end.

 

[Bletchleyite]

The autistic spectrum ranges from people completely without speach, through to people who get PhDs and go on to become leaders in their fields. As someone who works in IT I’m sure you have a few colleagues who are on the spectrum!

Indeed. I'd probably say I have quite a few traits of it myself (though have learnt social responses over the years so it isn't that obvious) - the understanding of rules and procedures very often creates a massive aptitude for IT - after all a computer never does anything other than precisely what it is told to do, and so considering human traits in relation to one as many people do just doesn't work.

I'd venture that if I was a kid now I'd probably be diagnosed with some form of it - it's much better understood than it was.

 

[Qwerty133]

Yes indeed. Someone like that probably wouldn’t be at a special school in the first place as it would be wrong for them.

The autistic spectrum anges from people completely without speach, through to people who get PhDs and go on to become leaders in their fields.

It often, as in my bro’s case, occurs alongside other difficulties.

I think that the decision as to whether an individual is in mainstream or specialist schooling is often down to how they react when they are struggling to cope. While those whose reactions lead them to withdraw from a situation either through blanket not attendance or through mentally blocking out what is going on around them are normally kept in mainstream schools, those whose reactions more visibly effect others or cause safeguarding issues are much more likely to be pushed towards special schooling even where academically they are keeping up with their peers (often after having one of more fixed term or permanent exclusions and quite often being without a placement for some period of time).

 

[Bayum]

I think there’s a little too much focus on it being councils wanting to save money here...

Another factor at play is that there isn’t always the specialist features in place. There was a child in my school who struggled on the socio-emotional snd behavioursl side... Everyone agreed that the best place for them would be in a specialist centre, however if the child was taken on the support for other children within the LA would have been lost.

I have two children in my current class, and one is diagnosed and below ARE, but they are making progress. If the child is comfortable and making progress and their needs are being met, why switch?

On the complete opposite end of the spectrum, I have a child whose needs the school isn’t able to meet. There is little to no work in their books since January and their progress has plateaued and probably even fallen from any they mind in the Autumn term. There are huge indications that this child is on the autisitic spectrum and even more so on pathological demand avoidance (PDA). This is a form of autism that makes the child completely resistant to demands or anything they perceive to be in the form of a demand. Again, we’ve had specialist input from SEMH, and because of the nature of this child they themselves have suggested there needs to be some intense work done on the CAMHS and SEMH side of things that they wouldn’t be able to access in mainstream education. Again, there are no resources for this child to access because of the lack of funding.

The lack of funding came directly from Gove, who, in his own way, wanted to make equality a far more difficult approach by slashing the amount of money provided to LAs to access and fund specialist help and support.

By no means am I saying the arguments above are incorrect, I think there are some councils who will actively try to withhold pupils leaving their mainstream schools, and also schools are actively trying to hold onto these children because without them, the funding earmarked for these pupils is then lost. However, there are more factors at play than LAs saying , “We don’t want to subsidise specialist education for your child”. Some LAs do not have the resources or funds to increase resources.

 

[Bald Rick]

In my experience (of which I have much), it is a combination of the local education authority (and their policies), the support services on offer, and the attitude (and experience) of the schools concerned.

Some LEAs are fantastic. Other are not.
Some of the support services are fantastic. Others are not. Although generally the people involved try hard, but there are often not enough of them.
Some schools really ‘get it’. This usually starts at the top. Some schools don’t, and again that starts at the top.

What is happening is that the subject is being discussed more openly and in the mainstream media. This is a good thing, as the mor that people hear about the subject the more likely they are to understand. There was a feature on Radio 5 this week about PDA, which as Bayum mentions presents somewhat different challenges. Even now some health authorities won’t diagnose PDA as a condition, which then causes issue in education and mental health provision. However the mor eXit is talked about, the more things will change for the better.

Thank you to the OP for starting the discussion.

 

[Up_Tilt_390]

Thank you to the OP for starting the discussion.

Not a problem, it was kind of an accident

 

[Up_Tilt_390]

Given we're on about education in this regard, I think I ought to share my own experiences as someone who falls on the spectrum and only really admits to doing so because of having admitted at a few years back when I first joined the forum. Had I not done then I probably wouldn't do so now. But anyhow, here's a bit of insight for you.

It was said I would do fine in a mainstream school, and for all my primary school years and first secondary school year I attended one. But I then moved to one which had a support unit that could help people who struggled. Thing is though, we might know a lot more about the ASD spectrum as a whole now, but back then when I started only one teacher in the entire school I went to had any idea what my condition was. Everyone else wasn't, for need of a better word, qualified to deal with such a person like myself.

It wasn't easy, in fact I had issues, and at one point the whole education tried to keep me in my original secondary school and only failed to do so because of an understanding officer and the headteacher saying straight up "this isn't suitable for him". It took my parents quite the battle to get me a suitable school, and quite honestly it could've ended in disaster because of how difficult it was. When it all started, everyone said it would be fine despite how little was known about the issue as a whole. Even today some still don't understand it.

As for the experience itself, as I said it wasn't easy, and the fact is I was always, metaphorically speaking, a lion among sheep. Nobody knew what it was, but most picked up that something was obviously different about me as an individual. Now I won't go into too much detail about it, but secondary schools that lack any learning support is not at all suitable for the majority of Autists, whether they be low or high-functioning because sometimes it just has that one issue that few would understand.

Thankfully special schools aren't the only option, there are mainstream schools that have learning support units available with staff who are qualified to help you out. I'd say that would be a great place for someone who is high-function on the spectrum and struggles academically. Unfortunately, the spectrum is so broad (as you would expect from a spectrum) that it's an area with many shades of grey, and honestly the fact councils still have so little understanding about it means some people out there still struggle to get through education.

Education isn't the only issue people on the spectrum have. According to the National Autistic Society, only 15% of adults on the spectrum are in paid full-time work, and 8% are in part-time work. This leaves at least 77% of people on the spectrum without any employment and can be stuck on benefits their whole lives, and a lot of them do wish to contribute to society. But because the world is built around neurotypicals (non-autist) it just creates a great struggle, which further increases the accompanying problem of anxiety and depression for a lot of people on the spectrum.

As an individual I wouldn't say I was low-functioning, I certainly know how to get dressed and everything, but I don't regard myself as high-functioning because I actually have poor social skills and struggle to just get on with people as a whole, and after a while it seems like people get sick of me, and sometimes vice versa. I must admit, I sometimes think I was meant to be a cat, since they're much more relateable, and I pretty much do what they do, which is sitting around in silence, sleeping, eating, drinking, and when in crowds or social events, silently judging people and wondering how I can escape this dreadful situation.

Quite honestly I wonder how the world would be if we had our own society rather than try and assimilate into a world that is hostile to us. I had that as an idea for a dystopian novel at one point, but the society eventually collapses because of it's inherent problems. But all in all I hope I've been able to shed light on some of the issues surrounding what we're on about, and perhaps it's related to some problems you or a relative has faced. It does seem a lot of people here have a few issues regarding it.

 

[507021]

I have mild autism myself, I was diagnosed about ten years ago.

When my older sister first suggested to my maternal family I could have autism, they and the primary school I had left the year before thought there was "no chance" that I was autistic. At secondary school, I did struggle, particularly in the last couple of years when it started to affect my mental health.

I didn't have many friends at all, and I was regularly bullied for being "different" and not fitting in. The only pluses I take out of secondary school are I am still in contact with the friends I made, and I did well in my GCSEs.

Now however, both of my parents, partner and those in my family who know about my diagnosis are very supportive, which is a massive help.

 

[Bayum]

What is happening is that the subject is being discussed more openly and in the mainstream media. This is a good thing, as the mor that people hear about the subject the more likely they are to understand. There was a feature on Radio 5 this week about PDA, which as Bayum mentions presents somewhat different challenges. Even now some health authorities won’t diagnose PDA as a condition, which then causes issue in education and mental health provision. However the mor eXit is talked about, the more things will change for the better.

Thank you to the OP for starting the discussion.

Again, it isn't necessarily a point of health authorities not diagnosing the condition, there isn't a proper acknowledgement in either the DSM or the ICD from which to 'diagnose' the condition to.

 

[amateur]

I have asperger syndrome. A formal diagnosis.

This thread was split from the trans thread. When people meet me for the first time, they automatically assume I'm lesbian. Deep down, and pretty much my whole life, I have always wanted to be a boy.

 

[alxndr]

I have asperger syndrome. A formal diagnosis.

This thread was split from the trans thread. When people meet me for the first time, they automatically assume I'm lesbian. Deep down, and pretty much my whole life, I have always wanted to be a boy.

Quite a large proportion of trans men are autistic/have aspergers, although no one's quite sure why. That's not to say that all autistic people are trans, or all trans people are autistic though.

 

[Master29]

I'm not sure where you are going with the equalities brigade comment. As an autistic person myself (among other things) I am glad I got put in mainstream education, albeit with almost constant one on one support which I am not quite sure would happen nowadays. Put simply, I wouldn't have had many opportunities had I gone to a special school for autistic people, certainly not gone to uni for example. The possibility was looked into. Maybe standards have changed. That said for some specialist education is the only workable option. My biggest thing I hold against my parents is that unlike my neurotypical brother I was never entered into the 11+ exams for the semi local grammar school. Why should autistic people be denied the opportunity available to others?

Not always sure one to one support is a good thing anyway. It usually leads to dependence on people. Having said that I totally agree that being in mainstream gets more opportunities as you aren`t shepherded away to the holding pens of ""special needs"" education.

What my main impression has been is that Mainstream schools just do not want the responsibility or have any incentive (even the payment they do receive isn't worth the effort and is misused tbh) to make any effort with any kid with some form of difficulty 'fitting in'

It's been very soul destroying.

Since the advent of academies things have gone from bad to worse from an autistic viewpoint. Sadly autistic children are very often dumped in with emotionally disturbed and dangerous children with disastrous results.

 

[amateur]

Quite a large proportion of trans men are autistic/have aspergers, although no one's quite sure why. That's not to say that all autistic people are trans, or all trans people are autistic though.

I recently started a new job. And already people are labelling me as weird or anti social.

What I wanna know is, why do they think I'm "strange", and not as timid, shy or reserved?