National Autism Week

www.autism.org.uk/get-involved/tmi/actions.aspx

That's good, watermeadow. I'd love it if my grandson could do that when he gets a bit older.
The problem is you think he's listening to others and then you realise he hasn't really understood.

My autistic granddaughter works to improve public awareness and ways of helping young people with ASD. Going to London for meetings, talking to people with influence, appearing in videos, all these are hard for her but she does them to spread understanding and make life easier for all those whose lives are made difficult by autism.

Yes, and so have my grandson and his parents.
My grandson laughed at some of it, as it was so recognisable.

Has anyone else read "The reason I jump" by Naoki Higashida? Written by a 13 year old child with autism explaining some of his feelings and thoughts.

That's great swanny. My DD has found just such a hairdresser in Glasgow. The boys can sit, stand or whatever and they work around them. She has also found a very good, patient optician who test the boy's eyesight, and helps them chose glasses. They even went out of their way to find frames for the youngest in red and neon blue, as it was the only colours he wanted.

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

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.

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'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/

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.

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?

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.

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?

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.

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 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.

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.

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

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'

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....?

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.

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.

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.

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