autism

Autism used to be know as pervasive developmental disorder. That term is still relevant -its pervasive. It affects every aspect of a childs or adults perception of the world. 'Mild' autism is not a useful term. People who are more cognitively able are more likely to develop strategies to help them cope with their autism. Tricia I have to say that I find your views hopelessly out of date. Understanding of autism has made quantum leaps since your day. In my work with adults I often heard of their being dismissed by EdPsychs as just being naughty. This has left a large group of devastated survivors of completely the wrong approach to this client group. Key point-believe the child. believe the families. They don't make these difficulties up!

I have a thirteen year old grandson with ASD. He was diagnosed when he was four and has had a one-to-one assistant all through primary school.

However, the secondary school he started at was too big for him, and he was so anxious going to school every day because of the noise he would have to go through before he got to his nurture centre, and he was always frightened of being late for anything that he would run away from teachers who wanted to talk to him so he would not be late for the next lesson.
He had tears in his eyes and was always telling himself he would be alright every morning. So my son asked if I would help to homeschool him.
We have done that for over a year now. It seems to be working.

My 9 year old grandson is being assessed (very slowly!) for possible autism. The school is being very good but most of the teachers don't seem to have come across children like him. He's always been clever and has a huge vocabulary but over the last couple of years he has changed from a child who loved school to one who has continual headaches and stomach aches on school days. His biggest problem is that he keeps getting into trouble without being able to understand what he has done wrong. At one time he used to get sent to the headmaster when he was naughty - but he used to enjoy that because it gave him a captive audience to talk at.

My DD is starting to home school all the GC as of now. They are moving from the coast to the city as there is a really good, supportive home schooling circle near by. Both of the boys struggle with making friends, the elder one has trouble with facial recognition. They are both anxious, and Christmas at school has been problematic as their usual curriculum has been disrupted by parties, plays etc, none of it was normal! They both continue to have "meltdowns" when they are overwhelmed. My eldest GS is fab though. He has a very refined palate, and can list all the ingredients in his food. I think his Mum should steer him towards catering as a career!

Please don't blame Trisher for my views - I'm Tricia!
I still stand by what I said earlier - I don't agree with giving young children a psychiatric label when they are only mildly affected ( and never really.)
For one thing they can change so quickly, and for another, it's often an excuse for doing nothing - "they can't help it they're ..." Just look at the behaviour that's causing problems and try to correct it, like any other child.
One of our sons would probably have been diagnosed as high functioning Aspergers, it didn't exist in his day, and husband is severely dyslexic.

Exactly Greenfinch it makes us want to live to a grand old age, just to be here for them.

Yes we love to help but also know that we won't always be there for our families.

I never want to put anything on Gransnet about family ills and woes, because it's private, but think autism is the exception because I want it to be discussed and thought about.A friend once said to me " he will grow out of it though, won't he?" Err, no!
Autism is a hidden thing in plain sight, through talking about it, I now know lots of people with a son/grandson/ nephew/ friend etc, it certainly isn't a rare thing.
Life is very hard for autistic children, they lack the instinctive grasp on situations and people that neuro-typical children have.Most of them are highly anxious about what will happen next.Life is also very hard for their poor parents, and even hard for grandparents as well.

I have worked with and known several children and adults with AS disorders, including my nephew.

Like anyone else these children are different little people in all sorts of ways even before we get to the their place on the AS! Some children with ASD do learn and develop in mainstream, others cannot.

Some parents, understandably,find accepting their child has a disability very difficult, some ignore for a long time and others accept and can have realistic or unrealistic expectations for their child/ren. It is very hard for families and schools should be honest with parents and work with them to help them find the best environment for the children to thrive. Sometimes the noise and busy atmosphere in a mainstream school is too much for a child with ASD who at home seems less agitated or 'flappy'.

Each child is different and needs a tailor made package to help them achieve and develop as well as possible...just like any child. I hope all you DGCs find that. Education and Health Care Plans now go form birth to 25 years to straddle that difficult young adult stage. All schools must have updated policies to accommodate the new Code of Practice.

Also Educational Psychologists (EP) that I have worked with have been hugely understanding about the specific needs of children requiring additional help and support.

Many people that complain about children with special needs getting funding and support just do not stop to think that the support and help they get when they are younger may be what makes the difference in whether or not they are functioning and coping adults. Generally functioning and coping adults need less funding than those that are not coping and struggling to the point where they cannot live on their own or hold down a job or even get a job as they couldn't get through schooling.

So yes, that money should be helping children that need the support, including those that are considered to have moderate or minor needs. It's all an investment in their future.

jane I believe your right, it's those that present with the obvious symptoms that are helped most.
My son is one who has flown beneath wire and was completely missed. I know we and he are lucky that he doesn't have challenging behaviour but I feel so sorry for him in that he doesn't have a single friend and hasn't had since he was 10. I don't think he will ever have a relationship with a girl and can't find an employer as he can't handle interviews I wonder to myself if his ASD had been picked up much earlier whether he would have been able to overcome this aspect to a degree.
This isn't meant as a whinge, those families who's children are more severe deserve any help they can get.

Thank you Greenfinch , the difference is my H had 70 good productive years before he started his problems, your DG have not had and will not have this.

And thank you Nellie. Your last sentence is so true.

Thank you annsixty. Your empathy is much appreciated coming as it does from someone whose life is far from easy.You know what it is like to struggle.

Crafting No in the 70s even if autism was. He was a little shy and awkward. The difficulties keeping jobs started to become apparent and I found out more.
OH recognises the list of signs I showed him but won't take it on board.

Tricia I was only diagnosed as dyslexic when I was 50 by the OU. It was unknown when I was at school. I tested as being bright but could not perform well in general school work. I survived but did miserably in my exams. If only help had been available then I could have done much better. just perhaps by something such as extra time. or taking my writing errors into consideration.

You cannot begin to compare dyslexia with the difficulties presented by Aspergers/ASD.

It presents a whole range of other difficulties in social communication and comprehension and those with very poor social skills do not do well in society generally. An inabilty to empathise with or understand others feelings is a big disadvantage in all aspects of life. Many with the condition are very vulnerable to exploitation,they do need support and it should be provided.

I entirely agree. Trisher clearly doesn't understand that the autism spectrum is just that-a spectrum. There are individuals who fall on this who are severely learning disabled with dangerous challenging behaviours and those who are highly intelligent and are fortunate to have had the support to enable them to work to their maximum ability. I've worked with people from both ends of the spectrum. I find that the more obviously affected people tend to have support and understanding but the more able ones can suffer greatly but in such subtle ways that they 'fly below the wire' and tend to be missed.

I'll probably get shouted down on this, but we all have to make the best of what we've got, and it's unrealistic to expect special needs money to be spent on these hundreds, maybe thousands of children with moderate problems.
I spent my working life as an EP and can tell you there have always been many children who need extra help, most much more needy than those in the so-called "autistic spectrum."

You won't get shouted down. I will, however, ignore it for the rubbish that it is.

What is going on? It's similar to the diagnosis of dyslexia - we've always known that some otherwise clever people can't read or spell, but most of them learn to cope. eg by choosing a more practical carreer, marrying a literate husband or wife.
I believe that there are very few of us who don't have some kind of learning or personality problem, no such thing as "normal".
I'll probably get shouted down on this, but we all have to make the best of what we've got, and it's unrealistic to expect special needs money to be spent on these hundreds, maybe thousands of children with moderate problems.
I spent my working life as an EP and can tell you there have always been many children who need extra help, most much more needy than those in the so-called "autistic spectrum."

I have autistic grandchild too. Lots of sensory issues and social skill problems. It is heartbreaking. Nellie sorry to ask (and please do not reply if you'd rather not) but did you know your DH had aspergers when you got together? I often wonder what will happen to my darling GC and whether he will have a job or family.

Sympathies to all. I will not beat about the bush it can be a very difficult condition to live with for the individual and the carers.

My OH has aspergers and the sort of issues that come with the conditon have raised many problems for him at work and in our relationship.

There are those people with severe autism and challenging behaviour which can include self harming and others who manage to hold down jobs and relationships but are just a little different.

iaincam has a good point.

Real difficulties in getting support can arise when these young people leave school.
There are over 18 "in betweeners" who can perhaps excel in certain very specific subjects but cannot manage the situations of every day are often left to fend for themselves.

The local authority I worked for would ony accept Autistic spectrum children as needing support if they actually attended special schools for children with learning disabilities. Support services for this "intermediate group" are unfortunately very patchy around the country.

All carers need to badger their LAs for support long before school leaving age.

My heart goes out to you all. I just wouldn't know how to cope but I suppose that like everything else we can when we have to.

Agreed roses. Your grandson sounds so like mine in many ways and we now think he has ADHD as well. He is constantly on the go and is forever climbing all over the furniture while holding a conversation. He only sleeps for about 5 hours a night and there is no variety in his diet. He has been prescribed some milk shake type drinks and has to take a multi vitamin supplement. The only time he is still is when playing chess. Like yours he is very clear about what he wants to do and yesterday told his teacher (a very laid back young man) that he only wanted to do things that are fun to which the teacher replied "all learning is fun". Things are not too bad at the moment but we do worry about the teenage years.

Having a label is better than being misundertood,isn't it greenfinch as was the case years ago.My DGS is 11 years old and is difficult and a real challenge.He is very intelligent, but is not Aspergers, it is autism.He also has ADHD, and possibly, other problems. he is very anxious and depressive.He was diagnosed at age 3. He is now at a school specific to his needs, and likes it there, and is doing fairly well.He will only learn something or perform a task when he wants to( either at school or at home.)He was in nappies until age 7 and still refuses to wash ( has to be done for him.)He will only eat certain foods, and is underweight and undersized for his age.He has always had severe meltdowns which have been very frightening to deal with, but is slowly getting better at dealing with anger.He is very literal, and likes things done in a certain way.He sadly has no friends at all, and beyond the family circle will not speak to anyone.He needs attention at all times and is not good at being or playing, by himself.He takes various medications to keep him mentally stable, both at night time, then more in the mornings, they make a huge difference to his behaviour.We have no idea what the future holds for him.The main thing though is that he is diagnosed and is in'the system' to access help from SW when needed.

ADHD is another disorder which is on the increase , what we used to label as just badly behaved and in need of some attention , just what is going on ?

What is going on is that these things are being diagnosed, instead of children being written off as naughty.

I can tell you that my 9yo child with ASD and ADHD (plus hypermobility and sensory problems) is not "just badly behaved." Watching him struggle with things like impulse control due to the ADHD where an idea gets a fishhook like hold into his brain and overrides all sense of danger. Watching him struggle at night to shut down and sleep so the only way he gets sleep is by taking medication that knocks him out, but only for part of the night. He's terrified of taking tablets, so he can't take the time release tablet that will knock him out for longer. Watching him literally on the go during the night and then from 5am when he gets up for the day until the medication knocks him out at night, constantly touching things, talking (often repetitively), walking, wriggling in his seat, always moving in some way, shaking or rolling his head, rolling his eyes while he's talking to try to focus on what he is saying when he's really wound up.

I feel sorry for all the children that were dismissed as badly behaved that didn't get the support that they needed, as it may have made a huge difference in their lives.

My 8 year old grandson has autism: his twin sister does not. He is in mainstream school with a one-to -one helper and has reached all his targets so far. However ,he has two main problems. One is in the area of social skills. He is an extreme extrovert and behaves inappropriately towards other children by hugging them and not giving them their personal space They obviously find this difficult. He doesn't get invited to parties (like his twin ) because the other mothers regard him as excitable .Secondly he is beginning to have low self-esteem in some areas mainly because he has a helper but also because his sister writes and draws so much better than him. They say at school that his perfectionism is holding him back because he tears up and starts again anything that he does not consider good enough. On the other hand yesterday he achieved a merit "for his understanding of chronology" whatever that was.
In my early years of teaching we had no children with autism but we did have "naughty children". Thank goodness we have advanced so that these little ones can be helped from the beginning even though it means wearing the label.