Autism

[RowleyBirkinQ.C(deceased)]

I'm Autistic (Aspergers - lower scale apparently) to be honest I plough through day to day

Good for you fella, excuse my ignorance but are there certain situations in everyday life you find more uncomfortable than others? and do you have certain therapies or exerises to make you feel comfortable? Or am I talking bollocks?

 

[Aseros]

My girlfriend has mild aspergers syndrome. She stayed in public school until 18 for breaking away. It's hardly noticeable really. She does have a few difficulties in social situations but she can overcome them fairly easily. There may be 'mild' mood swings, but again solves itself quickly! To be honest, if I didn't know she had been diagnosed it would be hard to tell from an external point of view. She is of course an amazing person and well...that's it!

 

[Strike]

Like braders, I also have aspergers/ mild autism! I am 26 got my own flat, however job front not much luck and for time being help out (non paid voulenteering a few hours a week) a local charity shop occasionly (currently want to make use of Business Admin qualification but not much luck, tend to get a bit down sometimes, but do my best to keep upbeat. I have had challenges in my life but like the Albion have managed to overcome many things.

 

[Screaming J]

My eldest son is on 'the spectrum'. He was - thank god - diagnosed fairly early; rising 5 when he was struggling in mainstream school. Fortunately there was a brilliant autistic specialist school near us (Wargrave House in Newton le Willows) where he went till he was 19. We then FOUGHT (and finally won) for him to get a place at a residential college in Shropshire; not because we didn't want him with us, but because we wanted him to have the opportunity of a more adult college experience and to learn to be more independent.

He is now back home and fortunately - with support - has a (partly paid) work placement at the local Wetherspoons where he can happily indulge his obsession with white goods as he operates the dish and glass washers!

His main problem is he finds it difficult to relate socially and he is reliant on others as he is vulnerable on his own. The staff at Wetherspoons are great though and he has found things like Facebook a godsend for being able to communicate much more easily than face to face which he can find very difficult.

The next phase is to see if we can get some sort of independent/sheltered living away from us as he definately does NOT want to live with us for ever - I think 'normal' humans can drive some Autistic people nuts, we are just so erratic and unpredictable! Tom thrives on routine and timetables, even little things like the bus to go into work being late can really make him wig out.

We are currently looking to change our car and his ears are so sensitive that the indicator noises on some cars really make him grate. So we have been touring the showrooms, explaining Tom's problems and asking if we can sit in cars to see whether or not the indicators hurt Tom's ears! Never mind engine/car size, reliability etc, our shortlist is purely determined by indicator noise!! I was a bit nervous about doing this but was pleasantly surprised at how understanding all the garages were. Not a Swiss Tony in sight!

Personally I think all men are somewhere on the autistic spectrum, we all make lists, collect things and/or have obsessions!

 

[Lush]

Personally I think all men are somewhere on the autistic spectrum, we all make lists, collect things and/or have obsessions!

I think so too *cough* Programme Collectors *cough*. I tend to be a bit of a 'Monica from Friends' in that I like filing and order and couldn't walk out of the house with a used mug and plate left on the table. I know too that feeling when you've just had enough of 'people' and want to go home. When you realise that autistic behaviour is probably in all of us, but in extremes in some, it helps a bit with your understanding and tolerance.

 

[oldalbiongirl]

There was an interesting programme a while back on autism with Louis Theroux. The people on that show were truly inspirational. Im an early years teacher and just wish that people would realise that we are all unique and don't fix into perfect size boxes. We all have lots of behaviours, tendencies, and personality traits, due to genetics, brain development and life experiences. There are so many "normal" expectations, even in early years. We are all individuals who develop in unique ways and should be treated on an individual basis.

 

[Falkor]

Louis Theroux is amazing, his so good at what he does.

 

[Dunk]

I'm a teacher but by no means an expert on autism. I do know that courses I went on a few years ago advised me that most men were a bit autistic and it was a spectrum, women were largely unaffected. Understanding has moved on in the last few years and, interestingly, people now think that autism in girls manifests its self in things like colouring in well, behaving well, following instructions well and working as a part of a group well- all good things.

Sometimes autism in boys means they need things to be logical and so are good at maths, but this isn't always so and I do worry that the 'Rain Man' stereotype has over-simplified the condition.

Many autistic children have a sort of acute hearing meaning background noise that most of us ignore naturally can be as annoying as the high pitch noises light-bulbs sometimes make (or car indicators- I read). It must be horrible and it does mean that busy/noisy classrooms are hard to manage.

Schools do a lot to help autistic kids these days and providing they are not violent or dangerous they can manage in mainstream schools.

 

[severnside gull]

I spent the last ten years of my career working with young people with Aspergers and other disabilities. The best way I can describe it is that their neural pathways (the "roads" that carry information from one part of the brain to the other) are blocked. Some of these roads, like a motorway under construction, have never been open for traffic while others may have been operational but are now closed and barriers are blocking the way. For most of us, even without signposts, we manage to work a way around the blockages when they occur ("turn right, first left, next left , next right" and hopefully you are back on track). Unfortunately for those on the autistic spectrum the ability to logically plan an alternative route to get back on the right road is missing and they simply have to cast about at random hoping to find the right road. Sometimes they succeed. More often they become hopelessly lost. As for anyone in those circumstances, a routine journey can become, to varying degrees, difficult, painful, and frightening. If you can apply that model to the simplest tasks in life - you might begin to understand how truly alienated from the day to day world that we navigate with little effort, a person with Aspergers can become. My experience is that the most challenging aspect for the outsider to understand is the general lack of emotion and inability to recognise body language which seperates the autistic from the world through which most of us journey without thought. The fact that it is a disability that cannot be seen and which is harder still to voice simply creates more prejudice.

 

[severnside gull]

I'm a teacher but by no means an expert on autism. I do know that courses I went on a few years ago advised me that most men were a bit autistic and it was a spectrum, women were largely unaffected. Understanding has moved on in the last few years and, interestingly, people now think that autism in girls manifests its self in things like colouring in well, behaving well, following instructions well and working as a part of a group well- all good things.

Sometimes autism in boys means they need things to be logical and so are good at maths, but this isn't always so and I do worry that the 'Rain Man' stereotype has over-simplified the condition.

Many autistic children have a sort of acute hearing meaning background noise that most of us ignore naturally can be as annoying as the high pitch noises light-bulbs sometimes make (or car indicators- I read). It must be horrible and it does mean that busy/noisy classrooms are hard to manage.

Schools do a lot to help autistic kids these days an against them.d providing they are not violent or dangerous they can manage in mainstream schools.

No disrespect intended to you, but if this is the level of understanding within the education industry in general then generations of people suffering autistic spectrum disorders will continue to be failed by a system that is not only unable to recognise their needs but which blindly persists in reinforcing discrimination through its failure to learn about or to institute practices which might meet their needs. I can see that you genuinely mean well and that you feel that schools are responding to needs and that, for me, is horribly saddening.

I am not a proponent of separate education (other than for the very few for whom it might be disadvantageous to the autistic learner or to others working with them). My experience is that schools are rarely equipped with the resources to manage the disruption which an ASD student can bring to the classroom and that as a direct result they quickly become disengaged from the learning environment - told to sit at the back of the classroom, or outside in the corridor, or in a separate classroom where disruptive learners are sent (from their inevitable perspective) to be punished. This is not specifically teachers' fault - they receive almost no education on what ASD's involve or how to work with them and are rarely if ever given sufficient resources. The vast majority of ASD sufferers eventually learn to get by to varying degrees in a world which understands them as little as they understand it. The best job we can often do as facilitators of young peoples' learning and development is simply to give them more time in which to adjust - not overly edifying let alone rewarding. Sadly the educational system is structured in many respects to resist any formal definition or diagnosis of a disability simply because (call me cynical if you like) money follows diagnosis and it is an area which has always been starved of adequate funding.

 

[Brightonfan1983]

Wasn't there a kid who went up on the London Eye when it first opened and when he got down drew an incredibly detailed version of the 360 degree London skyscape.

Yes, I remember that. Makes one wonder what the brain is capable of, and what we could achieve if only we knew how the darned thing functioned!

 

[KZNSeagull]

That's a very good description, Servernside and one that I use when trying to describe Autism to uninformed. There is some very good advice and heartening comments on this thread already.

Other good books on Autism are "Born on a blue day" by Daniel Tammet, who is a maths savant and "Freaks, Geeks and Asperger Syndrome" by Luke Jackson which is the only book I have found that has been written by a teenager with Asperger's - our eldest is on the spectrum and has just turned 13 and we are about to start reading this book with him.

We found the National Autistic Society's "Earlybird" course to be extremely useful - hopefully they still run it. We found the one run by West Sussex County Council to be depressing and pretty crap really, so hopefully they have changed it!

As Taybha said, it is hard work and extremely frustrating sometimes, but the good times outway the bad by so much that both my wife and I feel blessed that we have our son.


I have given various talks to local schools about Autism as the level of ignorance here is astounding. I have found that by and large, once people know a little bit more about it, they become much more accepting and interested. I wrote an article about it for a website that i do work for here in SA and the one quote I got from Autism South Africa that really upset me was this:
"It can be exceptionally traumatic for the outreach staff of Autism South Africa as they witness a child being tied to a bed leg because the parents have been told by community members that their child is possessed and they must not allow the demon to run through the village. Children have been found covered in scars from the Sangoma having tried to beat the devil out of the child, or they hear of children bleeding to death after bleach has been poured down their throat to make the child vomit out the demon."

What I do find incredibly annoying is that there have to be loads of "celebrities" affected by it, but very few seem to want to talk about it very much. Much of the stigma and ignorance of Autism could be dispelled if someone really famous stood up and said "I have an autistic child and they are fantastic!".

 

[KZNSeagull]

No disrespect intended to you, but if this is the level of understanding within the education industry in general then generations of people suffering autistic spectrum disorders will continue to be failed by a system that is not only unable to recognise their needs but which blindly persists in reinforcing discrimination through its failure to learn about or to institute practices which might meet their needs. I can see that you genuinely mean well and that you feel that schools are responding to needs and that, for me, is horribly saddening.

I am not a proponent of separate education (other than for the very few for whom it might be disadvantageous to the autistic learner or to others working with them). My experience is that schools are rarely equipped with the resources to manage the disruption which an ASD student can bring to the classroom and that as a direct result they quickly become disengaged from the learning environment - told to sit at the back of the classroom, or outside in the corridor, or in a separate classroom where disruptive learners are sent (from their inevitable perspective) to be punished. This is not specifically teachers' fault - they receive almost no education on what ASD's involve or how to work with them and are rarely if ever given sufficient resources. The vast majority of ASD sufferers eventually learn to get by to varying degrees in a world which understands them as little as they understand it. The best job we can often do as facilitators of young peoples' learning and development is simply to give them more time in which to adjust - not overly edifying let alone rewarding. Sadly the educational system is structured in many respects to resist any formal definition or diagnosis of a disability simply because (call me cynical if you like) money follows diagnosis and it is an area which has always been starved of adequate funding.

Well said!

 

[BadFish]

I think so too *cough* Programme Collectors *cough*. I tend to be a bit of a 'Monica from Friends' in that I like filing and order and couldn't walk out of the house with a used mug and plate left on the table. I know too that feeling when you've just had enough of 'people' and want to go home. When you realise that autistic behaviour is probably in all of us, but in extremes in some, it helps a bit with your understanding and tolerance.

As an exercise Sue Larkey asked everyone to change their toilet roll placement habits i.e. if you have it turned to it runs next to the wall turn it the other way so it runs over the top away form the wall. While we discussed the difficulties of this, she explained that this is the same as asking someone with Austism to change their habits and obsession, how ever uncomfortable this ideas is for us we can multiply that for them.

Disclaimer: i don't give a monkeys which way round the toilet roll goes but i do have my own other little obsessions that have to be done a certian way.

 

[Jambo Seagull]

Another Dad of an Aspie here. My boy has also just turned 13. He is in S1 (first year of High School) up here and life is a struggle for both him and us at the moment. He's also got a diagnosis of ADHD. He wakes up every weekday morning at 5.52. He's still pacing around most nights after 10pm.

On the plus side he's a very bright boy. He's in the top set at school for all his subjects and is just about coping at mainstream school despite having no friends and being a target for bullies. The school are working very well with us but I must admit to having a lot of trepidation for the future.

There have been a lot of pretty positive articles in the media about Aspergers. I don't know about others but it's been a pretty hard slog for me.

 

[BadFish]

No disrespect intended to you, but if this is the level of understanding within the education industry in general then generations of people suffering autistic spectrum disorders will continue to be failed by a system that is not only unable to recognise their needs but which blindly persists in reinforcing discrimination through its failure to learn about or to institute practices which might meet their needs. I can see that you genuinely mean well and that you feel that schools are responding to needs and that, for me, is horribly saddening.

I am not a proponent of separate education (other than for the very few for whom it might be disadvantageous to the autistic learner or to others working with them). My experience is that schools are rarely equipped with the resources to manage the disruption which an ASD student can bring to the classroom and that as a direct result they quickly become disengaged from the learning environment - told to sit at the back of the classroom, or outside in the corridor, or in a separate classroom where disruptive learners are sent (from their inevitable perspective) to be punished. This is not specifically teachers' fault - they receive almost no education on what ASD's involve or how to work with them and are rarely if ever given sufficient resources. The vast majority of ASD sufferers eventually learn to get by to varying degrees in a world which understands them as little as they understand it. The best job we can often do as facilitators of young peoples' learning and development is simply to give them more time in which to adjust - not overly edifying let alone rewarding. Sadly the educational system is structured in many respects to resist any formal definition or diagnosis of a disability simply because (call me cynical if you like) money follows diagnosis and it is an area which has always been starved of adequate funding.

Working in the educations system here has highlighted the need for education and training of staff and teachers. There are still many people who 'don't believe' in Austism in the school system. But i believe that this is changing for the better.

I had an extremely frustration situation last year where a boy in my class was obviously on the spectrum somewhere. When he joined my class i was told that he was extremely difficult defiant and naughty. To be fair this was a pretty accurate description and I spent a lot of time dealing with the situation. However some days this lad just tried so damn hard to overcome all the difficulties he had with the lac of structure in certain parts of the school (before and after school care, recess and lunch). I was repeatedly told that all her needed was tough discipline ("don't give him and inch") by his father and the leadership of the school. But as I was getting my son diagnosed i realised that the behaviours were similar and that the mantra that helped me "he doesn't mean it" could work at school too. We began to see more effort and less bad days especially as we tried to put more structure in his school life.

The frustration I felt was from colleagues who talked about and told me about him in such a horrible way "he's horrible" "he's just mean" "I have never met...." etc etc. I have not been teaching that long and was shocked that professional educations could talk about a 9 year kid like this. I still get told about the exploits of "your mate" even though he has been partially diagnosed. I spend so much time defending him but have been asked by his parents to keep his diagnosis secret so he doesn't get labelled.

 

[BadFish]

Thanks for all the replies, this thread is certainly making me feel a bit better about things and less alone with all the frustrations and difficulties.

I have said it before but i will say it again. The additive free diet we are all on has been amazing for all of us but especially my son. It has taken us about a year to get it right and occasionally we miss something while out or at parties etc. It hasn't "cured" him but is really helps him to deal with the stresses and confusion of his Aspergers.

www.fedup.com.au

 

[severnside gull]

Unfortunately the idea of the savant autistic is widely held to be an absolute truism. The reality is that it is incredibly rare and for most they are, for the large part, pretty "ordinary" with some being good at a particular subject or subject range and others not in exactly the same way as any other set of learners - I was once told, quite authoritively by a social worker, that a young adult couldn't be autistic because tbey were no good at maths! Unfortunately the autistic spectrum encompasses everything from the impacts on ability to learn as a result of visual, hearing or balance problems at one end, to the effects of foetal alcohol or drug syndrome or cerebral palsey at the other. We are still trying to find ways to work with these varying impacts at all levels. As an example, I worked with a young lady who was unable to walk in a straight line and would use (bouncing off) a wall as a means of making forward progress. I managed to get an optician to prescribe blue-grey tinted lenses and after some adjustment she can now walk down the middle of a corridor in a straight line. From not being able to read she is currently in the second year of a degree course although sadly it looks like she will ultimately fail to complete her programme because of lack of understanding and support from tutors for other associated behavioural issues. The glasses though changed her potential to achieve and I would encourage parents and others working with Aspergic young people to explore some of the options outside the box. Diet in particular can make a massive difference. Focus on natural products, introduce fish oils, encourage higher levels of hydration, and cut out e-numbers, dairy products and starches - increase exercise levels - you will be surprised how much it can help the young person to focus and to optimise their learning abilities. If it helps, my experience is that most people with high functioning autism will "catch up" some of the educational delay and are often ultimately more able to cope than we believe would be attainable.

 

[Jambo Seagull]

For me the hardest thing about having a son with autism is the shame I feel at not having the son I thought I was going to have. I just assumed that I would have the same relationship with my son as I did with my Dad who sadly died before my son was born. I assumed I'd be taking him to football from an early age and he'd have similar interests to what I had as a kid. Ironically his last big interest was football and for about 18 months he was obsessed with Man United (a team I have never supported or liked!). He's just coming out of this obsession and is now onto metro systems around the world. I have managed to take him to a few games including Old Trafford in the cup game against Crawley Town. He's seen the Albion at Carlisle and I took him to the Amex for the Reading game last month. It was a birthday treat for me which my brother organised as he is a season ticket holder in the West Stand Upper. Unfortunately, despite wearing industrial ear defenders, he found the noise too loud that night and we had to leave after 15 minutes. I decided that night that I'm wasting my time taking him to football matches so it's back to museums and train stations.

 

[Dunk]

No disrespect intended to you, but if this is the level of understanding within the education industry in general then generations of people suffering autistic spectrum disorders will continue to be failed by a system that is not only unable to recognise their needs but which blindly persists in reinforcing discrimination through its failure to learn about or to institute practices which might meet their needs. I can see that you genuinely mean well and that you feel that schools are responding to needs and that, for me, is horribly saddening.

'Horribly saddening' seems a little harsh. We have some fantastic kids with autism getting great results at my school and that is due, in part, to teachers who know what they are doing and (often very stretched) outside agencies helping out from a young age. I won't bore everyone with a list of things teachers have to cope with and I fully accept that school is harder for youngsters with autism, but to say they are all being failed is wrong. Quite the reverse is true in my experience.

In answer to the original poster- we will do our best to help your child and local schools have a good record in this area.