autism

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

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.

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.

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.

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.

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.

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

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

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.

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!

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.

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.

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!

Agree, Jane10. Who on earth would want to make up these problems with your child or grandchild?
Look at how many do not want to recognise the disorder. Even the children say there is a sense of relief having a diagnosis.

just look at the behaviour that's causing the problem and try to correct it, like any other child
They are not like any other child though.

Would be good if it was a behaviour and a problem, wouldn't it?
I wouldn't be able to count the number of problems.

l recognise so many of the characteristics other posters on here are describing. Not to the extent your relatives seem to have, but many of them are apparent in OH.

Don't anyone dare come up with the comment that "ASD people often have unusual gifts in other areas" as if it compensated for the likelihood of being rather lonely in life and all the other problems. (I am quite sure you carers won't) but I have heard it.

I have said this on similar threads, but it seems to me there is a often a general reluctance to talk about the great difficulties and stresses that can be caused to carers of people who's general behaviour can be very wearing.
Carers seem to feel they have to be brave and go on trying to do their best and feel disloyal to mention any stresses.

Look after yourselves.

Jane10 - you're right, I think attitudes and views have changed a lot, it's been a long time. Hopefully the amount of support and provision available too, which used to be very thin on the ground.

I am amazed but delighted with all the comments my question let to. Thank you to all of you. I should perhaps add her that I am actually an Australian and just saw about this site in the back of a novel I just read. Thought I'd have a look and here I am - having a conversation with you lovely folk on the other side of the world!! I have to comment on the post from Heavenknows and understand where she's coming from as I too worked in a school with many disabled children and had no personal understanding of autism until we were confronted by it in our own family. Please believe me that it is a very real and at last better understood disability. Our government actually classes it as a 'catastrophic disability' now and families can access some government funding to help with the high costs of good therapy. Please do not dismiss this so harshly. We have an opportunity to help our boys become good, fulfilled adults or leave them to suffer and then live on government pensions...I know what we prefer.

I'm so sorry but I put the wrong name on about the comment I wanted to reply to - it was Tricia2 I believe.
Hope this doesn't upset the whole conversation.

No worries, smarti.

Even with my 6yo technically diagnosed as "high functioning" autism, he also has learning difficulties, including most likely dyslexia (which is being looked into), memory problems, and sensory processing problems. High functioning makes it sound like it's just minor but it's not. It affects him all day every day. The main difference between "high functioning autism/aspergers" and "autism" is whether or not there's been a speech and language problem.

My days are filled with carer duties, homeschooling, meds (they both have asthma and eczema), and dealing with the ongoing battles with school for one and the LA for the other to get an EHCP in place. It's never ending - as soon as one battle is done, another one seems to start. Win the battle for provision? Then it's a battle to get it implemented. Any changes to needs? Right back to square one again.

And don't get me started on the comments about them having other "gifts" due to their disability. My older boy is exceptionally good with numbers - cue the misguided "Oh, he's just like Rainman!" comments. At that point, I have to walk away, as I don't trust myself to respond in a civilised manner in front of the dcs.

I don't normally post about family things, but agree that this needs talking about.
My 10 year old GS has high-functioning autism. He is fully bi-lingual and lives in Spain. I worked as a SENCO for many years and I diagnosed it (clearly the health and education systems were not going to) and then had the difficult task of telling his parents. They responded wonderfully and sought help everywhere they could. There is no help at all available through the school system, but they have been supported by the Asperger's Association and have spent an enormous amount of time helping his class teachers to understand his needs. He functions fairly well in the Spanish system as it is mostly about rote learning and listen, memorise, regurgitate. In the holidays he is clearly exhausted and regresses.
It is hard on so many levels. We wondered why he has an obsession with talking about hair, beards and moustaches, until we realised it was all to do with not being able to interpret faces. They came to visit us last summer and whilst his sister flourished in the countryside, he clearly suffered from sensory overload and needed a lot of quiet time on his own. These challenges emerge all the time and he is one of the ones with far fewer issues than many others.
It is so hard for everyone and living 2000km away makes it very difficult for us to support them as we would wish.
Oh yes and the "what is his special talent" bit, makes me want to scream.

I know there are a lot of ASD children out there but it is good to hear others stories. Whoever said look at the behaviour that's causing the problem obviously knows nothing about the range of problems that an autistic child can have. I love our GC dearly but the future holds so much worry. Fear of loneliness, anger, hurt and pain. I know everyone can suffer from these things but ASD children need all the help they can get as does any child suffering from anykind of mental or physical disability.

Exactly Crafting it's a lifetime of worry.

Because it is a disability that cannot be seen it gets little sympathy from the general public and as someone else said their mindset and behaviour make them vulnerable and open to abuse. I do not wish to compare disabilities but my cousins grandchildren get far more sympathy when out and about because they suffer from cerebal palsy.It is an obvious disability.