National Autism Week

My son is classically autistic and has just had his 38tb birthday. How true that autistic children grow up to be autistic adults and that is a life sentence. I love my son dearly and would give my own life to make him 'normal' but there is nothing I can do. There is infinitely more awareness now about autism than there was 35 years ago when he was diagnosed. Then I had to pay for a private assessment, my GP had never heard of the condition, there were no teachers with any training, no appropriate nurseries or schooling. Every step was a struggle to get the best for him and some degree of normality for the rest of the family. What angers me now is that all these years later I still cannot be at peace because his placement in a residential community for autistic adults is constantly under threat because of funding issues with adult social care. My heart goes out to families with an autistic child. It is a long and hard road.

I showed the film to my grandson, 15, this morning. He really enjoyed it, and laughed at stuff he recognised.
His 9 year old sister only watched half of it, as she said she lived with it every day, and knew what it was about, although her brother wasn't as bad as some people with autism.

Thanks, Anya.

My grandson, who is nearly 8, has high-functioning autism, together with epilepsy and incontinence problems. He is frequently teased by other boys, and prefers to be with the girls. He has many sensory problems and my daughter is trying to help him to calm himself down during meltdowns. He is so bright, and loves learning - he's a history buff, great at maths and is constantly asking questions to enhance his general knowledge. We all dread his move to secondary school, hoping he has learned some more coping mechanisms by then, as there are no special schools near where they live. His little brother is beginning to show signs that he too has some form of aspergers/autism, and life can be very tough sometimes. Outsiders are so quick to judge their behaviour, and I'm glad that there is increasing awareness of autism. That video was brilliant.

Well said Jane10 our 26 year old 'child' is on the spectrum.

Thanks for this thread Anya and special ((hugs)) to all with grandchildren on the spectrum. As a grandma I try to help my DS and DDIL as well as DGS. As thatbags points out, support and understanding are also needed for those who live with someone with autism.

Please please don't forget that there are 5 times as many adults on the autism spectrum than there are children! They all grow up and still have it!

Rinouchka I have looked at the Smart-ASD website and tried to join but nothing happens.

My GS is also on the Spectrum and his mother is a single parent and an only child so no cousins or siblings. He does have one friend but he has been bullied at school and the target of a few nasty children. The best thing we did was buy him a puppy. wrecked the house but worth it to see the lovely smiles and friendship plus lots of conversation.

Good video Anya. It should be shown in all primary schools .Our problem is when to tell DGS that he is autistic .He is 9 now but was diagnosed just before he was 3.He is not yet aware although his twin sister knows which is helpful. He is in mainstream school and more than copes academically especially in Maths which he is sometimes asked to explain to the class .He gets on very well with the girls but the boys are beginning to tease him because he doesn't like football and also because he is sensitive and sometimes tearful.He is a very confident child and could do well if only society was a little more accepting.

I love that quote anniefrance. Not heard of it before.

B makes a valid point about support for those who live with autistic people.

Found the link very good Anya. Thank you.

When I visited my American family after 3 years, I was concerned about how my interaction would be with our autistic grandson (9). My son gave me a few pointers, having been out of the loop for so long, and they were invaluable. The early intervention scheme my grandson attended from 3 yrs. old was marvellous. He now attends mainstream schooling, but still has additional one to one support, and it is hoped that that will no longer be required in the next academic year.

Good post Anya, and I will relay the link to my daughter, which I thought was very good, also Rinouschka's input re the free on line course.

My 8 yr old DGS has recently been diagnosed as autistic, we thought maybe borderline, but in fact he is in the middle. which just goes to show that autism is a very big umbrella, as he is a delightful child, has friends, gets invited out, intelligent, a little awkward at times and if you didn't know it you would think he is 'just being a boy'. I hate putting labels on children but sometimes it is necessary in order that they are in the right environment for them and that the rest of the world is aware that they are different.

I set great store by the quotation by the C19 American philosopher:

'If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.'

Henry David Thoreau

My gddaughter is 13 and has autism which is made up of so many different things. It's rare that a child/person has only adhd or asbergers or indeed ocd but usually a combination of a few if not all these traits. At 10 she found friendship with her peers difficult was always worried she was doing something wrong at school. At home the tantrums would be full on because there she could be herself and show the frustrations of her day.
I'm pleased to say she is now at senior school has met many friends with similar and differing problems that she has clicked with. The teachers are brilliant at recognising pupils strengths and encouraging them. She is a high achieving redhead which she does get teased about - the usual ginger or swat etc. It rolls off her back now where it used to bother her. My point is just love him ignore ignorant people educate those curious about him and make sure his senior school is not just aware of his needs but will meet them and encourage him. It isn't easy and it breaks your heart at times but they're our grandchildren and our job is to love them and give total support to his parents whatever they decide. Good luck.

We too have an autistic grandson. Being diagnosed was also a great help in that my D & SUI were reassured that it wasn't their fault and that our GS's problems were not just due to "naughtiness" Hr is a lovely boy but struggles a bit at school as he doesn't always understand instructions and is very sensitive to noise and smells. He is an absolute genius at LEGO though! Fortunately his problems are not too severe. One thing we have learned: never be judgmental when we see children behaving badly, they may be on the spectrum and the poor parents are probably doing their best.

I worked as a support for children with Aspergers in a primary school for many years. Over the years I was with about 7 different boys on a one to one basis. The children were a joy to be with, once a relationship was formed which took a little time, a sharing of jokes and an understanding of the way they think, the children blossomed. They still had social and other difficulties, of course, but they didn't feel alone .I feel an understanding adult to act as a mentor and friend is very important. It seems this doesn't happen so much in schools right now. I hope it still does, because I hate to think of " my boys" feeling lost, and frightened even, as some clearly were.

Every week is autism week for people who live with autistic people as well. The video is lovely and a good way of explaining an aspect of it to people, especially children, but how it can affect the people who live with an autistic person (or persons) is rarely looked at or spoken about and there is very little help. Support is needed there too.

I have a friend and her grandchild lives with her. Her GS is autistic. She has printed cards on her and whenever she is out and there may be issues - she hands these little cards to onlookers so that they know there are issues and to be respectful. Each person is special in their own unique way. She has found the cards to be invaluable - people change from being judgemental to be being a little more understanding. Hope this helps.

Thanks Anya a really simple explanation everyone should see.

My lovely 14 yo grandson has Down's and is the most amazing boy. We were so sad when he was born, not knowing he was going to be born with the syndrome, but oh, how soon it turned to happiness. What a good thing to promote awareness of autism and similar conditions.

Possibly very mild case of Asperger's Syndrome - can be little more than a label. as in the case of my DS, who doesn't "do" strangers. His dad and I were bnth similar, but learnt to live with it, and DS isn't sure whether he has it or not, but definitely slightly "odd". Ignore ignorant stupid people and don't worry about him. Recommend a book called Freaks, Geeks and Aspergers Syndrome written by a teenager with AS and all his siblings had a range of Autistic Spectrum disorders, but a wonderful close family!

My own DGS is at a similar school Craftycat ( after a lot of campaigning to get him there) he can stay until aged 18.
However, it's not because our education system is so stretched, mainstream schools have had any amount of money put into them over the last 40 years, and even through all the good years, money was never put into what is considered to be mental health.
That is the shame of it.
There are so many autistic children out there suffering daily misery at either junior schools or comps ( particularly the latter) that this amounts to a national disgrace.

My grandson is on the spectrum and last week everyone in his class was invited to a party the child gave out the invites in class and left him out. Sadly this isn’t a one off but happens all the time. Mums actually pull their child away from him. Yet he is a bright, funny sweet child who occasionally is locked in his own world but if people treated me the way they treated him I too would lock myself into my own world.
Sadly it’s not just young people, I find parents are often worse, children accept him but it’s the parents who don’t include him especially mothers. This is only based on my observations and I have no real evidence to back this up however it is real enough to us.
I sometimes feel like he has been labelled and that no one embraces the positives only the negatives.
Thank you for addressing this.

Thankyou also Anya for this, my thirteen year old dgd is autistic, I shall watch it with her and her sister together, it has helped my gd to be "labelled" autistic, she no longer feels that everything is her fault, although she still says sometimes, why does nobody like me, the more awareness of autism the better

I've sent exDIL a link to the video. Thanks for putting it on Anya. DGS had a bad week - his teacher at Primary School, who has been excellent, was away for the morning and wondered how/if he would cope if she didn't prewarn him. Total meltdown. His mother had to go in and collect him. By Friday she managed to get him back to school by disentangling his fingers from fences on the way. His teacher said his head was down on the desk for part of the morning, and then his head went up, it was like a switch going on in his brain and he was completely back to normal. On Saturday his father brought him over to us for the day and he was like a ray of sunshine, even helping someone to wind a canal bridge up.

I had the privilege of being shown round a local school for boys aged 11-16 with this condition & similar 'problems'. If only all children with these misunderstood conditions could attend such a wonderful place. Seeing what they can achieve & how amazing & happy they are was a real joy.
It's such a shame that our education system is so stretched that only a few lucky children can get into places like this.

Thanks for posting this, Anya. We also have a 10 year old autistic grandson whose situation sounds similar to your grandson's - no real friend other than cousins. Although this video is aimed at children, I think many adults could gain understanding from it too.

Good luck with your course Rinouchka - it is all about gaining knowledge (and through that, understanding) of how these children sense the world - being more able to see the world through GS1's eyes and ears and all his other senses.

It's a revelation!