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Grandparenting

Ten year old granddaughter diagnosed with autism.

(48 Posts)
stella1949 Fri 08-Nov-19 07:42:52

My 10 year old granddaughter has just been diagnosed with autism - we've always known that she had learning difficulties and some "odd" personality traits , eating habits, sleeping difficulties , social awkwardness. My daughter recently had her tested and this is the diagnosis . DD explained that these days, the term autism is used to describe all the stages along the "spectrum" and that DGD is described as high functioning but needing various therapies and interventions to attain the best life possible.

She'll be getting OT and speech therapy , and the psychologist has advised various other interventions so we're all happy with the approach he is taking.

My husband and I love our granddaughter dearly , and we want to help in any way that we can, for her to have the best life possible.

If any other grans are in this situation, can you recommend any good books / websites about dealing with autism , from the point of view of family care and concern ? We'd like to educate ourselves as much as possible, so we can help our lovely girl .

Notthatoldyet9 Sat 09-Nov-19 20:31:11

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

Tamayra Sat 09-Nov-19 21:42:40

Message deleted by Gransnet. Here's a link to our Talk Guidelines.

Deedaa Sat 09-Nov-19 21:46:41

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.

Beachwriter Sat 09-Nov-19 22:04:43

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.

lemongrove Sat 09-Nov-19 22:05:07

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.

CarrieAnn Sat 09-Nov-19 22:22:36

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.

Hetty58 Sat 09-Nov-19 22:34:10

Notthatoldyet9, I agree entirely that more understanding is needed.

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

Greenfinch Sun 10-Nov-19 07:47:22

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.

lemongrove Sun 10-Nov-19 08:32:24

CarrieAnn life must have been very difficult for you, and you sound very kind and understanding.flowers
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.

firdaus19 Sun 10-Nov-19 11:51:31

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

PamelaJ1 Sun 10-Nov-19 12:02:08

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.

stella1949 Sun 10-Nov-19 12:10:59

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

Skweek1 Sun 10-Nov-19 21:47:05

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!)

Tedber Sat 16-Nov-19 17:09:27

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.

wildswan16 Sat 16-Nov-19 18:05:16

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."

Mealybug Mon 18-Nov-19 16:48:23

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.

Resurgam123 Tue 19-Nov-19 13:05:05

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.

Doodle Tue 19-Nov-19 14:15:38

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.

Resurgam123 Tue 19-Nov-19 16:36:30

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.

Doodle Tue 19-Nov-19 17:27:21

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.

lemongrove Tue 19-Nov-19 19:08:35

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’.

Doodle Tue 19-Nov-19 22:43:59

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.