Autism

I too have a 4 year old grandson who has just been diagnosed due to his parents being very concerned about the traits he was showing. I posted on here a couple of weeks ago about it and got such positive responses which I passed on to my son (they are in NZ) - he was extremely grateful for the information and the knowledge that these children go on to lead productive and positive lives.

I hope your daughter gets the help she asks for - an early diagnosis is helpful for all concerned. I hope your husband's recovery continues quickly - keep posing on here as it does help to share.

I am afraid the answer to your question is yes the problems keep popping up regardless of age. From other posts we can all see retirement isn't always all we hoped. All good wishes for your husband's swift return to health, when I am sure you will be able to support each other, your DD and GS.

Gosh. I put up the "story" - sorry ninathenana that I made an error - in case it could be of some help. For those who don't like it, ignore it. It helped me at times but obviously it doesn't solve the unsolvable. Autism is lifelong and fears about the future are always there. I have to live with that too. However, I didn't realise there would be hostility. It was my first ever post. I shan't bother again. There is enough anguish without online criticism and derogatory comments.

For goodness sake sandwich you can’t expect everyone to like a post surely?
Some did, some didn’t....it wasn’t a criticism of you personally.

And in any case it wasn’t nina who didn’t like the story, in fact she did like it and said so.

I agree with lemongrove, sandwichgeneration. There are a lot of people who do like it (including me) but not everyone will do the same as not everyone appreciates the same type of advice. Somebody mentioned they hated anybody mentioning God. When my first grandson died at 2 days my daughter received a card which simply said "I guess God just has other plans for you". It didn't register with my daughter but it brought me a lot of comfort at the time (and yes he certainly did have other plans....but won't go into all that now).

What am getting at is you can only try and if your help/advice is not well received by one, it will be by another.

I really hope it hasn't put you off posting?

Lots of great advice, thanks to everyone for trying to help. I will update in due course x

My GS is nearly 15 .Life is challenging but the one piece of advice I would give is fight for diagnosis ,help etc. Services appear to vary according to where you live and local authorities can be selective in their provision .Too many departments can be involved and they do not talk to one another .Good luck and best wishes to DH for a speedy recovery.

A diagnosis of autism is not easy at that age and may lead to more problems for the parents. As someone who has experience of late diagnoses ( age 30 and upwards) my feeling is that a diagnosis at school age is preferable when the full panoply of support becomes available. Meanwhile do not worry too much; there is nothing you can do and if any eventual diagnosis is for Asperger or high functioning autism then the child will be able to benefit from all he available education and may well surprise you as an extremely capable person.

I'm not sure how an early diagnosis of autism an lead to more problems for the parents. My grandson wasn't diagnosed till age 8 - it would have been very helpful to have had an earlier diagnosis. It would have stopped him being labelled as 'disruptive' at school, it would have reassured my daughter that her relationship break down wasn't the cause of his 'disruptive' behaviour and would have ensured he got the much needed support earlier in his life.
I'm also unsure what the "full panoply of support" that becomes available means. Support is vanishingly rare. It depends on the level of assessed need, the goal posts move ever higher in that respect.
My grandson is one of those "high functioning" people. He's very bright, interesting but socially totally isolated. thank goodness for the internet where he's found some of his people.
I didn't find the Holland- Italy story helpful either. Apologies if this post seems very negative. I don't feel negatively towards my grandson, or the many other children and adults I've known who are diagnosed as on the spectrum.

Sandwich, what a great message

I agree totally with your post Iam and my young teenaged DGS is the same.
Socially isolated and sad, although medication helps a little.
Bright, funny and very handsome ( on the positive side.)

We were the only baby sitters for our friends who had a son with Aspergers a type of autism . We loved him to bits and still do . He now has his own house and a job but can always nip home to mum and dad if he needs to . He was a great flapper of hands and got upset if a journey did not take him the way he expected but you have to accept these children as they are. He still likes to visit when we are at his mums and still seems to enjoy our company . He was lucky in that his mum helped him all the way and persued every avenue to get help so do the same for your grandson .

Floradora9 - I like your comment that we have to accept these children as they are. I apply it to all children. Our job is to help them make good decisions, make the best of their skills and not be ground down by the things they find difficult.

The little lad hasn't yet been diagnosed, has he? Let's wait and see. I didn't realise walking on tip toes was a sign of autism. My grandson went through a phase of walking on tip toes.... that's what it is, just a phase ...hope your husband recovers well .

crazyH - many toddlers have a tiptoe walking phase but not many also have hand flapping and no language skills alongside the tiptoe walking. Its the cluster of signs that mean the OPs daughter is right to seek a medical opinion. Whilst it's early days and we don't have enough information nor is it our place to diagnose, its not helpful to say 'its only a phase' in these circumstances.

I totally agree Iam.In my grandson's case it also included watching and making things spin,no hand waving and not responding to his name.

I totally agree Iam64, it has taken a year to get my DGS to respond to his name and even now, it is frequent. Waving goodbye isn't something he has picked up properly, no language skill, hand flapping, making a strange noise most of the time, the list is more than just that he doesn't talk or walks on tiptoes. Like most people who are in this position, I long for somebody in the know to tell me I am overthinking this, but as each month progresses, it becomes more likely that something about him is just different. Will I love him any less than my other DGC? Nope, if anything I might just feel more protective over him so it seems I love him more. What I really want though, is a diagnosis so we can all pull in the same direction and give him the best chances in life to be fulfilled. He gets so frustrated at not being able to communicate that at 3 it is difficult sometimes to handle his meltdowns and I don't know how I'll manage as he gets older but I have other family members who have children with autism so I know there are many strategies to help.

There are different levels of autism. Hopefully your GS's will be one of the milder types. Also thought you might like to read 'The reason I jump' by Naoki Higoshida which was written by a boy with autism.

Language is an internal code. We use words to describe items, people, emotions and actions and they not necessarily spoken aloud. Speech is spoken language. Look for comprehension of what is being said rather than the child itself saying the words out loud. Eg ask questions like 'Where's the window' and if they look at the window you know they know what a window is etc.

I agree Jane10 but mine doesn't necessarily respond to his name let alone me asking where the window is. He obviously doesn't lack intelligence though and will lead me by the finger to show me what he wants. He can also shake his head vigorously if you try to put something into his mouth he doesn't want so the word no may not be spoken but it is clearly communicated!

There are motivation issues here! Watch him. Check what he does understand. Observation is very interesting. Sometimes doing less is more with these children. Try to enter their world rather than try to make him fit yours. I often found that sessions copying an individual's movements was useful. Don't necessarily talk just imitate him, give lots of time and see what happens. Ideally, he'd see what you're doing and start trying to deliberately make moves for you to copy. It's interaction. It can be fun but don't rush into it.

We are currently imitating the noises he makes, have cue cards and signing. I tend to play alongside him as instructed and observation is something I enjoy doing so that isn't a chore.

I loved movement therapy as it was called then. Such a good way in. Too old and stiff to do it now though.
On another and positive note, several of the ladies in my Asperger group were waiting for their children's exam results today. All did really well. Note these are ladies with AS whose children also with AS got very good exam passes. It's not all doom and gloom in ASD!

There are degrees of autism. For someone who has come to terms with it and writes and talks about his relationship with his son Johnny do listen to Henry Normal. Henry was a comedian and writer and half of Baby Cow production company with Steve Coogan, originally a poet he gave up working and went back to poetry in 2015 in order to help care for his son. He does a lot for the National Autism Society. For all with autistic children I hope this helps www.youtube.com/watch?v=0LqquIPOqZM