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Ten year old granddaughter diagnosed with autism.

(40 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 .

Doodle Fri 08-Nov-19 14:41:46

Hi Stella you will find that there are many of us on GN with children and grandchildren on the spectrum. I am so pleased you are looking for help and advice because that means you will be able to support and help your daughter and her family. Websites, obviously the National Autistic Society is a good one. As for books, please, please read a book called The Reason I Jump by Naoki Higashida. I cannot recommend it enough. It is written by an autistic boy (the fact it is not a girl does not matter) and whilst not all of it may be applicable, it gives a good insight into how someone with autism can feel about the world around them.
Another useful thing to remember about autism is the saying “if you know one autistic child, you know One autistic child”. In other words each child is different and they do not all suffer from the same things.
Your DGD is lucky that she has you looking out for her. My DGS is autistic and we love him to bits. I wish we had known earlier the cause of many of his difficulties so that we could have helped him earlier. Be very tolerant. Read as much as you can, you will be amazed at some of the problems autistic children can have. Inability to tolerate the touch of clothes or certain fabrics, terrible car sickness, difficulty sleeping, problems with noise, a desire for order and structure in their lives. We didn’t realise for a while that our DGS hated change of any kind. If there was a plan to do something and it had to be changed for some unavoidable reason he had a complete meltdown. For some time we took this to be that he was showing off or being unreasonable. Only when we began to read up about it and realise that his mind was totally unable (at that time) to cope with quick changes did we realise he could not help his behaviour and changes had to be explained slowly and with understanding. That the meltdowns were not spoilt behaviour or showing off but a young mind tormented with an overload of information it could not cope with. I do wish your DGD and family well. You are off to a good start.

lemongrove Fri 08-Nov-19 14:51:55

Yes, all that Doodle has said.
The more you read, the better you can help her, plus be yourself around her and love her, she is the same girl that she always was.
My DGS when younger, hated any transitions i.e. ‘time to stop playing’ ‘time to go to nursery’ etc and suffered from anxiety all the time.Meltdowns were many and frequent.
A teenager now and things are much better than they were, but understanding the autistic viewpoint is key.

stella1949 Fri 08-Nov-19 15:25:58

Thank you both for your answers. I'll certainly get the book you recommended , Doodle , and will read the website too. Everything we learn will be helpful in the future. In a way this is a relief - so many things seemed "odd" in her behaviours but we didn't know what was the reason. Now at least we know, and can move forward, armed with some knowledge.

Doodle Fri 08-Nov-19 19:45:34

stella it makes such a difference when you know why these sometimes seemingly odd behaviours occur. The life of an autistic child can be lonely and frightening. The more people who show unconditional love to the child the better.

Greenfinch Fri 08-Nov-19 20:31:47

Think about her transition to secondary school as that will be a great change. Will she do OK in a mainstream secondary school without support ,is there a school with an autistic unit near or would she thrive better in some type of special school ?Investigate all these possibilities with her parents. You may not make the right choice but you will have done your best for her .My DD had this dilemma a couple of years ago. Her friend has a daughter with autism and my DD has a son with the same. The friend opted for a special school some miles away and my DGS goes to a mainstream school with a unit and support. They are both doing well. She is in a protected environment and has socially integrated. He finds social interaction more difficult because he has specific interests which do not include football but he is doing the national curriculum which hopefully will stand him in good stead for later. Visit a variety of establishments before you make your choice.

BBbevan Fri 08-Nov-19 20:35:30

stella you and your family are truly lucky as many autistic girls are not diagnosed until later in life. You can , now you have the insight, help and support your beloved DD. As others have said read lots, listen lots, and most importantly give her lots of love and understanding. My GD 1 is a high achiever. She had lots of problems in junior school. Now she has a wonderful group of friends and is doing extremely well at school . So I hope all goes well for all of you .

Cerys Fri 08-Nov-19 20:38:51

Welcome to the wonderful world of loving someone on the spectrum. I have a wonderful DIL and an amazing DGS who both have autism. Yes there are challenges but many more joys - enjoy every moment !!

Luckygirl Fri 08-Nov-19 23:02:47

My DGD was not diagnosed till the age of 13 - lots of things now make a bit more sense. Sadly she is making very heavy weather of adolescence and is quite an unhappy young lady. It is a big worry to us all.

MiniMoon Sat 09-Nov-19 00:43:56

My DGC all have autism spectrum disorders. My granddaughter was diagnosed with high functioning autism early this year, she is 12. My daughter was also diagnosed as being autistic at the same time.
Her behaviour, and idiosyncratic ways while growing up make sense now.
As others have said, learn all you can about it. My granddaughter and her three brothers are all different and all delightful, (except when in a destructive meltdown). I love them all dearly.

Willow500 Sat 09-Nov-19 06:35:16

My 6 year old GS was diagnosed with high functioning autism last year and I had some great advise from other GN's with similar stories. The last time we saw him was 2 years ago (they live abroad) before diagnosis and it definitely made sense of his odd behaviour, obsessions, melt downs etc. He is a funny, lovable and extremely intelligent little boy who we are looking forward to getting to know more when they come to stay again at Christmas.

Please don't worry too much about your GD - although she may face some challenges ahead she will very probably go on to do great things. I found out a couple of weeks ago when talking to a relative that her 22 year old brother has Aspergers - she said unless you knew you'd never realise. He has a good job in IT, a partner and a baby on the way.

Gather as much information as you can and enjoy your special GD for the little person she is.

Buttonjugs Sat 09-Nov-19 09:42:23

I have an adult son with ASD. He is very articulate and intelligent but incapable of leading a normal life. So try not to have high expectations. Never say ‘but all girls do/are like that.’ One of the most frustrating things I experienced was people expecting him to conform if he had extra help. Focus on her mental health and take her lead. Don’t push her beyond what she is comfortable with because it will cause anxiety and may have a negative impact. Don’t expect her to join in but try to show an interest in her obsession - there usually is one. The relationship may be a giving one way thing but to see her happy will be a joy.

Ohmother Sat 09-Nov-19 10:17:18

Support the parents as much as you can by giving them a break every now and again. It can be exhausting having to do the extra work. Not grudgingly...just exhausting. You sound so lovely and caring.

Kate51 Sat 09-Nov-19 10:29:33

Hi Stella, another vote for The reason I jump. I have a nephew who is on the spectrum and found it really helpful to get some understanding.

EllanVannin Sat 09-Nov-19 10:59:16

We already had one child in the family who had a late diagnosis of ADHD and this last couple of days we've come to learn that another 3 are having to be fast-tracked from their mainstream school to a specialist school. A shock and a devastating outcome for all of us.

I knew their behaviour was " off the scale " at times but had no idea that it would come to this. I'd made allowances for the trauma's that they'd suffered but difficulties in their behaviours, etc . make it impossible to get through a day in the normal fashion. No wonder my GD has depression !

I remember having sympathy when it was in the news that the 3 children of Paddy McGuinness ( comedian ) and his wife Christine all had ADHD or autism as I thought to myself poor things having their 3 children with problems and now my GD has 4 ! What a bind.

Flowerofthewest Sat 09-Nov-19 11:52:40

My grandson has not long been diagnosed with high functioning autism. I guess I knew from very early on as I worked with people on the spectrum for 25 years. My DD paid for the assessment as he was only 7 and in her area there is a massive waiting list. The assessment would not have been offered for another 4 years.
There is a good book for the little one and classmates 'The Abilities in Me....Autism' it is one of a series of books for children who have different abilities.
My DGS is very open about his autism and proudly explains to anyone who will listen how his brain is wired differently. How it takes longer for him to process things. He is relieved to know why he is 'different'. I'm so proud of him.

Flowerofthewest Sat 09-Nov-19 12:07:02

Book series

Hert2Hart Sat 09-Nov-19 13:37:59

I very much support what you say. I work with people who are neurodiverse and very often named conditions overlap with each other , so a profile is very much an individual one. It's also important that the person develops an understanding and is able to communicate what works for them and what doesn't and that they then develop strategies to address the challenges.

Musicgirl Sat 09-Nov-19 15:06:16

As a mother of an autistic son l would say the best thing you can do is to be there to support your family. The best advice l was ever given was the phrase:"it's the rule" when there is something he has to do and he is balking at it. It's a good phrase because it is saying that it is universal and not just "getting" at him.

avalon Sat 09-Nov-19 15:10:04

I am happy to see this discussion. Our ASD grandchild is very gifted academically and parents hoped that would get her through despite all the social and behavioral problems with eating, sleeping, making friends, depression, meltdowns, etc. But the transition to university has been disastrous and she is now back home and very hard to help. Parents regret they did not seek social interventions and programs when she was younger. Very tough for family now to find support.

Abuelana Sat 09-Nov-19 15:35:12

Sorry I know nothing about autism. Just wanted to say what lovely caring GP’s you are. Hope you can find the info you need.

humptydumpty Sat 09-Nov-19 15:38:08

A friend has an ASD son. She highly recommended "freaks geeks and aspergers syndrome"

Rocknroll5me Sat 09-Nov-19 15:44:33

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

Mealybug Sat 09-Nov-19 16:15:35

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.

icanhandthemback Sat 09-Nov-19 17:23:55

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.