National Autism Week

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!

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.

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

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.

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 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.

Thankyou to the loving cousins who accept these children who are simply different ...

The thing is though, that it's often not just "simply" different. It's often quite complicatedly and bafflingly different. That's what makes it hard both for the autistic people and for those who live with them.

I too have a GS who has autism. He is the most adorable, loving child, very clever but has difficulties on the social side. Also problems with his speech and his core muscles. I tell my DD he is truly a gift because he is a special and beautiful child. DD is just waiting for an appointment with the paediatrician so he can get a statement of special needs to get the extra help he really needs.

Agreed thatbags and I don't go along with the 'delightfully different' brigade.My DD has had an awful time of it, and my DGS often hates himself.He is very intelligent and wants to be 'normal' and also to have a friend.Who knows what his adult life will be like, and if he will be able to cope with a job etc.When we are not here anymore, and his parents are gone, he will be totally alone in the world.Autism is not a blessing.

Thank you so much for this post Anya (((hugs)))

We are awaiting an appointment with CAHMS and a referral is expected for our 8-year-old DGD.....

She is a delightful child, kind and caring.... but consumed wth anxiety....?

At one point it was thought that my DGD1 was on the autistic spectrum The psychologist she was referred to however would not give a definitive diagnosis. He said she was an extraordinary child,Very intelligent and creative,and wired a little differently from most'. She had a very difficult and sad few terms at school when several of her 'friends' bullied her. She is a resilient child and we are very proud of the way she dealt with it all. She has made other friends now , but how I wish I could speak to the mothers of those girls who fuelled the situation by their ignorance. They made a little girl very unhappy and I hope ' what goes around comes around'

I've just come back to this thread and it's pleasing to see so many sympathetic and understanding posts. Autism has many different faces of course and degrees of difference and I understand that those families whose child/grandchild has a severe form have a hard time of it indeed

Thanks for that Anya. Another one here with an autistic grandson. We only see them about once every eighteen months (they live in Spain) and Skype is a bit hit or miss as he doesn't always want to engage. He does have friends, but also pushes away some children he would like to be friendly with, for fear of rejection. He is bi-lingual and we hope that this will help him in the future. We find it very hard that we can't do more to help them.
Hugs to those with children and grandchildren who are severely affected. I have worked with these children in the past and know how hard it is.

My GS is 10 and was diagnosed last year (although we'd known for ages) He has been told because he obviously wanted to know what the tests were four. He's quite happy with the diagnosis and has realised that the boys he gets on with best are also on the spectrum. At the moment he's got a lovely teacher who really gets him.

Great to see all these posts. My other half is on the spectrum, and life is a battle for both of us. It would be wonderful to see much, much more public awareness, including, as others have said, of the fact that autistic children grow up into autistic adults.

My five year old grandson is also autistic. He has a little known form called PDA which is very anxiety based and means he is unable to do many things despite being extremely gifted. He also is able to mask his problems at school so it is very difficult to get them to understand what my daughter goes through at home. He hates school and she has a daily battle to take him, often kicking and screaming, the mile walk. He will appear normal at school, though frequently refusing to do things, and his teacher thinks it is just bad parenting. (My daughter has a degree in special needs and works as a support worker for an autism charity!!) He can't go to parties, have his hair cut, go to the doctors, go in noisy or busy environments etc. He is practically impossible to get out the door on a bad day. He has a daily melt down after holding it in all day at school. He is a very clever but refuses to show it at school. He has been able to read and write since he was three and plays chess and minecraft at home. At school he 'just plays' in his opinion. It makes his stress levels manageable for himself but is doing him no favours! My daughter has a continual battle to get any support and had to fight to get a CAMHs referral.I love him to bits and worry about the future for him as many of these children get much worse as school gets more of a pressure and end up being excluded by schools that don't understand. I was a teacher and taught many autistic children so know what amazing characters they often are and how varied the spectrum is.

I too have an eight year old grandson on the autism spectrum. He is of average ability and copes well in mainstream education. He is very anxious in new situations, but the school is doing a magnificent job in helping him cope on these occasions.
However, his behaviour at home is very, very challenging. Although I worry for my grandson, I also worry about my daughter's quality of life, also having a special needs child puts a strain on some marriages. Although during my working life I had to deal with many stressful situations, and considered myself a "strong" person, I am now making myself ill, continually worrying about my daughter, her husband and a younger daughter. Of course we do everything we can to help, with babysitting, regular sleepovers and anything we can think of. ( My husband does not seem to worry like me) I know there are people much worse off than me, and I could write pages, but can anybody out there empathise with me, or give me a few reassuring words please?

petition.parliament.uk/petitions/173223

Deadline for this petition in May. For all those who are worried about those with autism and how they are seen in the world of work.
If you do a search on the government website, you will find lots of other petitions about autism.
It needs to be discussed more in parliament.

There are over ten petitions on autism. This one

petition.parliament.uk/petitions/173086/signatures/new

only has 44 signatures, but there must be more than 44 grans and grandads on here with grandchildren with autism.

If people affected aren't concerned enough, why should the general public be?

I've had an adult friend for some years now. She is alone as her mother and sister both emigrated. She holds down a lowly job which is hard work. The minute you meet her, within a minute or two, you know something just isn't quite right. Her parents obviously taught her certain coping skills and social skills which make her seem really odd. She has no friends but seems content enough on her own. She lives in a house where she rents one en suite room. She is an absolute history geek; she talks at people rather than with them. She has little concept of conversation skills and can tend to lecture. She seems completely unaware of her difficulties. No doubt when she was young this condition was not recognised the same and, indeed, even if it were there was little or no help. she was privately educated and speaks really well which equally makes her stand out. She is coping quite well with life and is content enough. She doesn't like loud noises or bright lights either. I'm trying to offer some consolation to others out there although I realise there is a massive difference between individuals but this lady is coping in her own way.

I've just come across this, and thought some of you might like to read it, and pass on, if you think it's relevant.

theconversationuk.cmail19.com/t/r-l-yuykghd-iudkikukhu-z/

Thanks dj All good stuff - simple and obvious to some maybe but, when you're in the middle of it, sometimes it can be hard to see the wood for the trees.

DS has been brilliant at finding out how best to help his son and passing on that info to DDIL and myself. English is not the first language of DDIL so I usually accompany her to appointments if DS can't. She speaks English extremely well but worries she may not understand something vitally important. I feel the biggest thing we've all learned is how to cope with meltdowns and what triggers them in DGS. Not only are they now far less frequent but, if/when they do occur, there is much less impact on everyone.

DGS has recently been given a small fish tank with tiny colourful fishes in it, in his bedroom. He has the responsibility of feeding them and finds it relaxing to watch as he drops of to sleep after his bedtime stories.

I have three grandsons, all on the spectrum. The eldest was diagnosed with Asperger syndrome age 5. He also has Tourettes and elements of ADHD. DGS 2 is 6 and has just had his Autism diagnosis. DGS 3 is age 4 and probably has Asperger syndrome and ADHD. They are all lovely boys. My DD home educates them as school was failing them.
Musicelf, my DGS 2 had many episodes of incontinence, both bowel and urinary. My DD read about diet and "accidents"with autistic children. She decide to try it, gluten free, and dairy free. He hasn't had an accident since! ☺ As an added bonus, the boys are somewhat calmer too.

Has anyone else seen this report on the BBC News webpage today? Full praise to the barber.

My DGS does not like his hair being touched and at one time it got so long it had to be held back under a baseball cap at mealtimes so it didn't fall in his food. He has lovely curls too which for some reasons strangers often wanted to touch (which caused him to scream). DS and DDIL have great problems washing his hair and as for putting a brush or comb through it - just forget it!! He doesn't mind it getting wet when swimming though

DS started to take DGS to his barbers with him, just to sit and watch, no attempt to touch the boy's hair. It's a traditional barbers, rather than a mens stylist. After about a year DGS was perfectly comfortable in the shop and, about 18 months ago, had his first haircut. He now goes regularly, doesn't always sit in the chair, sometimes 'Sweeney Todd' has to walk around with him or get on his knees. But the man has patience and the boy comes out smiling