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possible autistic grandchild

(27 Posts)
colyear Tue 17-Jan-12 06:02:36

Anyone out there with an autistic grandchild ? Any advice ?

Butternut Thu 19-Jan-12 18:48:33

ga - You've certainly done an excellent job with your son, which is lovely to hear.
I just get so frustrated sometimes, as I am unable to interact with my grandson except by skype, or a couple of weeks a year, so it is very difficult to form a real bond with him, or to get a substantial feel for how he is. However, I know his parents are doing a grand job.
Just sometimes it gets tough reading about all the hands-on grans here! Many of them are so lucky.

Carol Thu 19-Jan-12 18:11:27

The Curious Case.....is one of my favourite books - read it twice in the space of a few days.

kittylester Thu 19-Jan-12 17:30:21

grannyactivist that is really uplifting.

Mamie Thank you! I had looked the book up and come on GN to give the author's name, I should have known someone would help out. He also did a really funny book called "A little Spot of Bother" too which made me laugh out loud. Not relevant to the topic on this thread but relevant to middleaged people like most Gransnetters

grannyactivist Thu 19-Jan-12 12:30:29

butter CAPD isn't regarded as part of the Broad Spectrum Autism graph, but in our son's case we would say there are some similarities.
Greatnan could be describing our son in his childhood when she says: He takes everything literally, so you have to be careful what you say to him, and he cannot stand to have any arrangements altered, even for the better. He is painfully honest, to the point of being insulting, and never lies, even when a white lie would be desirable. When he was a little boy we had to learn NOT to use phrases such as, 'I'll only be a minute' because he used to become so frustrated if things then took longer than sixty seconds. He couldn't understand why people didn't say EXACTLY what they meant and for a time thought that all people were liars. Happily he now understands the social conventions and has a wonderful girlfriend who is able to help him to navigate the world.

sprite Thu 19-Jan-12 12:24:51

grannyactivist thank you for your welcome and for such positive information about your son. I am so glad he has done so well. Heartening news indeedsmile

Mamie Thu 19-Jan-12 12:16:17

It is by Mark Haddon.

kittylester Thu 19-Jan-12 12:12:44

A good read, and an informative book about a child on the autistic spectrum, is "The Curious Incident of the Dog in the Night' by an author whose name totally escapes me (old age is a terrible thing!!). He won plaudits, and some awards I think, from Autistic charities for the insight he brought to the subject. It is not at all depressing either! smile

Greatnan Thu 19-Jan-12 11:24:12

My second grandson has never been diagnosed with Asperger's, only dyspraxia and hyper-mobile joints, but it has been clear to the family since he was small that he has problems with his social skills. However, he has earned an MSc in Marine Biology and is one of the cleverest people I know.
He takes everything literally, so you have to be careful what you say to him, and he cannot stand to have any arrangements altered, even for the better.
He is painfully honest, to the point of being insulting, and never lies, even when a white lie would be desirable. He has lost friends through this. He was madly in love with a girl at uni, but he just did not know how to 'court' her and so he lost her.
His mother and three siblings are all dyslexic - he has a different father from the others. He would not let his mother ask for him to be statemented so that he could get extra time for his exams, even though he writes painfully slowly.
I saw a TV programme about a couple where the man had Asperger's and the wife had managed to come to terms with his odd ways and difficulty in showing affection. So much more is understood about it now, although some people think just in terms of The Rainman film and expect all sufferers to be mathematical geniuses.
There is, I think, some evidence that many people with Asperger's are highly intellectual even those with limited conversational ability.
Whilst writing this, it has occurred to me that his mother, who is the subject of my thread 'Why I am sad..'might also have undiagnosed autism, which would explain a lot of her childhood problems in making friends, etc.

Mamie Thu 19-Jan-12 11:04:39

It sounds more as if CAPD might go with autism / Asperger's sometimes and can also be mistaken for it.
My grandson has a PDD diagnosis which tends to be used for atypical Asperger's. In his case it is complicated by being bi-lingual. They live in Spain and he won't get any help in school, though they will get some tax breaks.

Faye Thu 19-Jan-12 08:51:37

I am amazed at the amount of information that comes out of Gransnet. I found Carly's story interesting!

www.youtube.com/watch?v=vNZVV4Ciccg&feature=share

abcnews.go.com/Health/story?id=4320297&page=1#.TxfZhqUzDZU

jeni Thu 19-Jan-12 08:28:05

butternut
So did I as for me it's kidney dialysis, as my husband had before his transplant, I now know to what you are referring!

Butternut Thu 19-Jan-12 07:58:09

I have just had to google CAPD, because I've never hear of that before. Is that considered to belong on the Broad Spectrum Autism graph, or is it something different, ga, do you think?

pink- I think the complexity of needs is very difficult to identify early - and of course they are so specific to each individual child. I am delighted to read that your son is being offered the balance of schooling for his needs.
My grandchild has speech difficulties, his motor skills are very poor, he shuns physical contact , in the main, and is obsessive in whatever captures his interest. He seems to be happy though, which is a blessing - but it is sad as one can never quite tell.

grannyactivist Thu 19-Jan-12 01:47:02

sprite hello and glad you've taken the plunge with your first post.
My son, who is now 20, was diagnosed with CAPD when he was in year 4 of Primary school. Because he was a pleasant child and had a very high IQ the symptoms were masked, but, like you, I had known for some time that he was 'different'. It was a great relief to finally have a name for the difficulties he was experiencing. The Ed Psych who conducted the tests was very positive and assured us that with the right interventions our son could achieve academic success and develop appropriate lifeskills. (She also said there was a heritability factor and we then realised that, in his youth, my husband had evidenced many of the same characteristics as our son.) Son was part home educated and finished his school days with a 93% grade average, he has lined up a good job starting on the day after he finishes his current college course - so CAPD has not held him back.
Although I approve in principle of mainstream schooling for 'different' children I found that I was the expert on my son and no teacher, however good, could have given him the same opportunities for learning that I was able to provide. I wanted him to enjoy his learning in a way that would have been impossible in full time schooling; hence he was home-schooled a couple of days a week.

pinkprincess Wed 18-Jan-12 23:28:27

My grandson, who will be 11 next month has autism. It was a long slow process to have him finally diagnosed.I still do not understand it all, but the main thing is we all love him very much.
He goes to a special class in a mainstream school.He started at another mainstream school where it was becoming evident he had problems.At first it was thought he needed speech therapy as he could only speak a few words, but it was found he had complex needs and was transferred to another school to be in the special class.He struggles with reading and writing, but has an excellent command of maths and is a whizz kid on the PC.
It is very complicated and hard to explain.

JessM Wed 18-Jan-12 21:02:45

Ho distressing apricot.
The local authority have a duty to provide suitable education for all children.

apricot Wed 18-Jan-12 20:26:47

I have a grangdaughter who has Asperger's. It's been a struggle to get her to school since she was 8 and now at 13 she won't go at all. She's been miserable and difficult most of her life, poor child, and her parents have had no help at any stage.

crimson Wed 18-Jan-12 11:52:28

Tosh; my son was very late talking and used to have terrible tantrums due to frustration [even worse if I pretended to understand him and he knew I didn't]. I used to worry, but his dad wasn't, as he said he was late talking as well.

sprite Wed 18-Jan-12 11:31:58

Hello Tosh, this is my first posting. I do know something of how you feel as I was in a similar situation with my youngest grandchild. Like your grandson she was..and is..a delightful child but because I have always been the main carer and the one who took the children to play groups, her parents seldom saw her with her peers and failed to recognise that she had a problem .
My fears were brushed aside and it was not until she began pre-school that her problems were recognised and her parents gently informed that she needed help.
She was assessed and found to have a serious speech and language disorder and poor comprehension. However, speech therapy helped and because she was finally in the system a comprehensive package of help was put into place by the time she began school.
Although autism is still suspected it has also been suggested that CAPD may be her problem but a full analysis will not be taken until she is seven.
If your grandson is due to begin pre-school then I am sure any problems will recognised and your daughter offered the help needed.
I do wish you all the best x

Tosh Tue 17-Jan-12 14:14:19

butternut...Thanks, I don't want to appear anxious if my DD & SIL aren't too worried...but you are right he is absolutely delightful xxx

Butternut Tue 17-Jan-12 14:08:51

He sounds delightful, Tosh.(smile)

I don't know when testing is done in the UK, and if there is some (usually from about 3yrs onwards), it tends to be of the come back in a year and let's see how he's doing variety - unless it is very severe. Nevertheless, it's worth getting him into the system as early as possible.
We've been very lucky, as in America they have a great 'Early Intervention Programme' from the ages of 3 onwards - specialized care in a fabulous kindergarten with the main aim of getting the kids into the right schooling which best serves their needs for the future. He receives speech therapy, occupational therapy and lots of interactive play.
He is coming on in leaps and bounds! smile

Tosh Tue 17-Jan-12 13:12:47

We have 2 yr old grandson who is adorable and is very good as he plays on his own,in his own little world.
He will play with 5 or 6 wee cars or books or coasters for hours..lining them up, piling them and is very OCD about the items he is playing with ...you wouldn't dare move anything. He doesn't speak apart from the odd word...but jabbers way in jibberish to the things he is playing with....oblivious to anything going on around him.
He makes very little eye contact with people but is more relaxed with his older sister and brother...and he doesn't usually respond to his name.
He has started having horrendous tantrums and bangs his head on the floor if my daughter can't understand what he wants, although she is extremely patient with him.
My daughter doesn't seem to worry too much and as she has problems with slight agoraphobia and has a young baby ...he doesn't have contact with other children...but he adores his 9 yr old sister.
I feel that he should have some kind of testing before he is much older.
He is such a lovely wee boy x
Anyone had similar experiences ?

Butternut Tue 17-Jan-12 12:37:53

I suppose I was hoping for a response from my previous post, colyear. Anyway, I see you started a Special Needs thread too, so maybe any responses to that will offer you some insight.

Butternut Tue 17-Jan-12 08:41:55

I'm sorry to hear you have an autistic grandchild colyear. As Mamie said, it would be useful to know a little more. Autism is a term used which covers a huge rainbow of difficulties, from mild delayed learning to serious physical, emotional and learning problems.

How old is your grandchild?
Does your grandchild talk?
Are motor skills under developed ?
How much interaction does your grandchild enjoy with other children?
Has there been professional testing for BSA (broad spectrum Autism)?
Is there agression present?
Is there lack of eye contact?
.......and I could go on and on......

Is there anything you are concerned about specifically?

I have a grandchild with autism, and I have found that once a professional diagnosis has been made, and appropriate support/schooling has been put in place, that I have allowed the label to float off somewhere, so that I can enjoy my delightful and funny grandchild just for who he is and for how he is.

All the best.

kittylester Tue 17-Jan-12 08:31:04

We have a (sort of) step-granddaughter with Asperger's. It took a long time to get her diagnosed and her parents have to keep pushing to make sure she is getting the best education etc for her needs but things are better since she went to a special school.

Our niece also has a son with Autism who gets lots of help to stay in mainstream school.

Hope things become clearer for you and your family soon. thanks

Mamie Tue 17-Jan-12 06:10:28

It would help if you could say a bit more colyear. How old is your grandchild? What degree of autism do you think he / she might have? I have a grandson with Asperger's and I also know quite a lot about it from my professional experience, but it covers a huge range of behaviours and there isn't really any blanket advice that would be helpful.