Ten year old granddaughter diagnosed with autism.

lemon that’s quite nice really the thought that we are all somehow on the spectrum. I see many of my DGS’s habits and traits in me and DH.

I don’t greatly care what terms you object to Resurgam as saying on the spectrum is a widely used phrase for those who are autistic.You may object to it if you like, but don’t expect others to stop saying it.
My DGS is on the spectrum, high achieving autism with co-morbid conditions.Explaining autism as a spectrum is helpful
To the understanding of it, indeed it’s thought by many experts that we are all to some extent ‘on the spectrum’.

Yes I see what you mean although I didn’t think of it it those terms. I think that people with Aspergers often say they have Aspergers but with Autism it can be a broad term that covers a spectrum of issues. For example some people have autism and ADHD some dyslexia and all sorts of other issues.
I have always thought of those with Aspergers as being somewhat clever but maybe having some problems with social skills.
I would not mean anything derogatory about saying someone is on the spectrum although actually I don’t think I would ever say it like that at all. As I mentioned before I usually say my DHS is autistic. Would it be ok to say he is on the autistic spectrum would you find that ok? Is it saying “on the spectrum” on its own that you object to? I can understand that, if that is what you mean.

To say someone is on "The Spectrum" is not considering them as an individual human being.
Can you actually define what, "The Spectrum" means.
A band of colours as seen in a rainbow etc.

I find it sounds just like referring to someone as just disabled.
He or she no longer a person appears to be a unique person.
"Just on the spectrum."
The word "spectrum" does not even go anywhere to explaining the persons situation.

I think the ‘on the spectum’ wording comes from their being so many different problems that people can have with cross links, a broad range of symptoms. Autism (to me) is not just one thing. I usually say my DGS is autistic but never sure whether saying on the spectrum is a better description. Certainly never intended to demean anyone.
Without wishing to upset you resurgam can you say why you find the words so demeaning.

For heavens sake STOP REFERING TO THOSE WITH ASPERGERS
AS ON "THE SPECTRUM. "
It is totally demeaning to those people who have Aspergers
How would any of you like to referred to in that manner.
They are people with a particular with a particular condition
Not on any , SPECTRUM.
Please stop using that.

I would say be accepting and don't try to mould the child into what you want them to be, be prepared for the little quirks and emotional outbursts. I used to worry that A would leave the room to be on his own but it's just his way and we accept that's the way he is, it's no reflection on us. He is now 7 and toilet training is only just starting to work. His new teacher has said he is very intelligent but they just need to get the words out, we were worried he would never speak at one point. His favourite saying is "stay with Nanna" whilst pushing Mum & Dad out of the door so we must be doing ok. Every child is different, just adapt to what your LO needs the most.

For anyone interested in learning a little more, the Open University has a free course called "Understanding Autism".

"The course explains how ideas about autism have evolved and explores diagnosis, causes, intervention and life-span development. Widely varying perspectives on autism are illustrated and key societal and cross-cultural issues highlighted."

Great post and very helpful to me also.

We have an 8 year old (my GS), just being diagnosed a few months ago as autistic which was quite a relief to us as it means he now gets the funding for 1:1 at school - although we have been lucky in that the school have always been very supportive of him without getting funding, but the funding could only be given once officially diagnosed (which took 4 years of my D and myself pushing constantly). He would never do as he was told and we now realise because he didn't realise when the teacher said "put your coats on" "put books away" for instance that it meant him! His 1:1 relays what he has to do by speaking directly to him and he does it.

I admit I find it all very confusing and initially I thought he was just a stubborn, stroppy, spoilt kid because it started when he was a toddler (first born) when he would throw tantrums if say his toast wasn't the right colour or not cut the right way (for him). I was like - "well do without then" ha ha. He even threw himself on the ground when we ordered a 99 from the ice cream van and he was given 'bunnies ears' i.e. TWO flakes and not one. The vendor was bemused "Blimey never seen anyone object to two before" Other parents watching in bewilderment and me being extremely embarrassed!

We knew then there was more to this than just wanting his own way and that is when our road to discovery started.

Over the last 2 years he has become much more acceptable to change, as he sees it, is still behind at school but is improving constantly at his own pace (which is all we wanted). We are able to reason with him in certain ways (unthinkable 2 years ago). In fact he is so easy to have around now.

Now that I understand it all more I am much more able to forsee any issues and prevent them from happening. I am continually learning and will definitely read the books suggested here too. (Same goes for rest of family btw not just me)

My D & H ARE worried about his future, he doesn't have many friends but small steps....He plays well with his immediate family (siblings and cousins all similar ages) He may never be academically brilliant, but he shows great aptitude for 'inventing' and making things, such as games. Something that can be encouraged.

I can understand how upsetting it is to have a child who is considered 'different' from the norm but what is the norm exactly?

I just say to others....never judge parents when a child is having a melt down in the supermarket etc (guilty previously) You just never know what is behind it. My tolerance levels have risen enormously.

Hi.Stella - I have an Aspergers son, diagnosed when he was 9 which gave us time to find coping mechanisms for him. There is an excellent book written by a 13-year-old lad who was AS, but his siblings all had different spectrum issues. It's called "Freaks, Geeks and Aspergers Syndrome" by Luke Jackson. He wrote it at 13 and it's excellent, as it's aimed mainly at the child him/herself as well as offering advice to the parents and other adults needing to understand the issues involved. Would also recommend "The curious incident of the dog in the night time" by Mark Haddon (more Aspergers, but you and your GD will enjoy it!)

Many thanks to everyone , for your supportive posts. I'll get the recommended books , I'm sure they will be helpful.

notthatoldyet,
Although I agree with a lot of points on your list I do feel that you do a disservice to autistic youngsters if you let them be.
They need help to enable them to live in this modern age, it can be very scary out there if they aren’t helped to learn how to cope.
Some will deal with the world easily some won’t.

Ymkje Wideman is a lovely friend of mine whose grandson is on the spectrum. She has been helping in his care for many years and it led her to study autism in depth in order to help others who might face similar situations.

She has created a series of books called "Autism Is...", along with a website and facebook page where she welcomes enquiries.

autism-is.com/

m.facebook.com/story.php?story_fbid=3718707571488518&id=611402878885685

CarrieAnn life must have been very difficult for you, and you sound very kind and understanding.
Fortunately there is a recognition of autism now that there never was before and plenty of reading matter and autism support groups, but what is still sadly lacking are places at autism schools.You only have to talk to friends and neighbours to realise how many people are on the spectrum,
It isn’t rare, and this needs to be addressed regarding school places.

Tammayra what you say is completed unfounded and is the reason for the increase in deaths through measles because people have not been taking up vaccinations. Hopefully the tide is turning but your comments should be censored.Your children won't have autism unless there is a genetic reason. Be grateful but please don't condemn others.

Notthatoldyet9, I agree entirely that more understanding is needed.

Tamayra, your anti-vac comments have been reported and I hope to see them gone!

I have a son now 47,who is autistic,severe brain damage and has now developed epilepsy.My younger son now 45,has just been diagnosed with autism as well.This was hard for me to understand as he has a very high I.Q. I just thought it was dyslexia.I now understand why relationship's are difficult for him to manage and hope now he has the diagnosis,life will be easier for him to manage.I find with son1 we have to keep things very regimented and simple,he has very limited understanding so things have to be taken very slowly and calmly.I hope you get as much support as you can,my mum was an absolute treasure,and often looked after son1 to give us a break.Just love and care for them all it's the best thing of all.

Tamayra.....am sure you mean well, but stop right there!
Childhood vaccinations do not cause autism!
It’s genetic and will be from a parent or grandparent.

Notthatoldyet9 ‘be more autistic’ ? Parents grandparents and friends of any autistic child/ person do need to understand what makes them tick, but the general population will not be going out of it’s way to accommodate you at any
stage of life, so if family can help the child to cope with life and fit in ( to a degree) then so much the better.
Autism never goes away,( just to dispel a myth) with age, but our teen DGS is coping with life much better than a few years ago, and we hope that things will improve even more in the future.

My daughter was not diagnosed until she was 37 and I have had to rethink her and our life. I am enormously confused over what my role should be now. I think everyone is coping very well with what they have to do. I wish I could say the same about me.

Notthatoldyet9 I was going to say make sure you enjoy her for herself. I always love seeing my GS. To be honest we seem to have a lot in common, although I wish I shared his good memory and wonderful eye for detail. He's 13 now and taller than I am and I think we still enjoy each other's company.

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Oh God !!!
I am on the autism spectrum and so many things are on this thread i do not agree with
I do not know where to start ...
Just let her be herself
Love her
Do not try to change her or force her to be neurotypical
Join facebook groups of autistic adults not american moms
Do not get fixated on therapy or fake cures
We do not HAVE autism
It is not a disease
We ARE autistic
How to help ?
Acceptance
See things differently
Be more autistic

Hello to all you other Grannies who have grandchildren with autism. My Grandson is also on the spectrum. He is now coming up for his 4th Birthday and we are starting to see the development of language/communication which is really starting to make the difference. You still can't take your eyes off him for a second otherwise he gets into the most awful mischief but things are starting to look up a bit.
My main advice would be to give the parents as much support as possible and take your lead from them about how to treat issues as they will know their child best. I have found that they need a short break from being parents every so often just to touch base with each other and to unwind.
Although there was a certain relief that we had a diagnosis, we also all went through a grief process because it was also devastating. A year on we are coming out the other side and are just thrilled with each step of progress he takes.
I love all my grandchildren equally but there is a special bond with him but I'm not sure why.
It is worth doing a lot of reading to try to get a handle on things (although there can be a lot of contradictory stuff too) and I have realised that it is quite likely that one of my children and another grandchild is more than likely on the spectrum. Things that I have always attributed to Ehlers Danlos Syndrome are more than likely to be ASD which apparently goes hand in hand with EDS. It would certainly make sense of a what I experienced as a mother and am now watching with my other grandchild.

My GS was diagnosed early and we could tell when he was a few months old that something wasn't quite right. The facilities and support in our area has been excellent and we have been very luck in that respect. He is 7 now and has just moved to a new school which is only for Autistic children, having been in mainstream school up till now. He did ok in mainstream but they didn't have all the facilities in the new school, his classes only have 12 pupils with two teachers in each group. He doesn't like change or certain loud noises but the use of ear defenders helps a lot and leaving him be without fussing over him too much. We have been told he's extremely bright but they just need to bring his communication skills out. Try and find what they do and don't like and tailor your care accordingly.

I’ve been aware that my seven year old GD was on the spectrum since she was two and her behaviour suddenly changed, she seemed not to hear, stopped talking, stopped eye contact, had meltdowns controlled by certain effects (spinning) a certain cartoon tv show... I researched and she seemed classic A typical. My problem was, and still is that her parents don’t acknowledge it so there are no discussions. I adore this GDD she is so sweet and because I have read everything I know of the condition if for example she quietly says ‘can you turn the music down’for example even though it is very quiet and ambient, we do immediately. She likes to lead one of us out of a room of people and explore the house in joyful silence.
Then just this summer my son was telling me that her school report was troubling. The school were suggesting she was assessed for special needs. It was found that when she was writing in class she was writing gibberish. Bless her she so wants to fit in.
And then her mum had a premature baby who has tragically been born with congenital myotonic dystrophy. She has learnt to breathe by herself now, and at two and a half months is beginning to swallow. It has been a lot to process - devastated. And I now wonder whether the older child is actually showing symptoms of child-onset myotonic dystrophy. This can sometimes include autism.
It also means that their mother (my DIL) has DM1 herself. Adult onset which starts to show symptoms in thirties (she is 33).
They will all get the results of genetic testing this month.
In the meantime they seem a very loving happy family. I’m so proud of them. It’s amazing what the human spirit can overcome. But still on the nursery slopes of dealing with how these results might effect them all. If they are in denial perhaps that is the best coping mechanism and we will face every challenge as it comes...it’s been a steep learning curve. Sorry if this has gone s bit off track but I have needed to share with you all