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grandchild has autism

(31 Posts)
Willow73 Sat 23-Jan-21 07:49:54

How do I help the parents who have just been told their child has autism? Are there any guides out there that have helped other grandparents? I want to do all I can to help and support them all but don't know how, especially at the moment with not being able to go over to them because of virus.

stella1949 Sat 23-Jan-21 07:59:10

My DGD has autism - it's a big thing to get your head around at first, I know. The best thing you can do is to educate yourself about autism - there are a lot of resources available online. I found Autism Speaks very good for families to understand how to support your child / grandchild .

Of course the best thing you can do is to love them unconditionally. They may not have the life journey which you dreamed of for them, but they will have their own journey and they'll need your support. Best wishes to you.

GagaJo Sat 23-Jan-21 08:10:36

I have taught quite few students with autism. They have ranged from genius to low ability. The autism has manifested differently in every single student.

One of my favourite students ever was an autistic boy. I would describe him as an eccentric professor type. He was different to the other students but was a lovely boy and had the potential to do exceptionally well if he was understood and taught according to his needs. I loved his quirks. Yes, he had meltdowns, but he never hurt anyone in the process and always had a very productive period immediately after one.

We also have an autistic boy in the school I work at now. We are gradually learning how to meet his needs. It is the staff that need to change to accomodate him, and if we can, he should be able to function in school.

Galaxy Sat 23-Jan-21 08:19:49

I have found through my work that for families it is talking to other families in the same situation, although as Gagajo said obviously every child is different. Usually in your local area there will be a group that offers this type of peer support. The local authority will have information on all services available. You sound lovely which will be of great support to the family.

Jane10 Sat 23-Jan-21 08:21:23

Check the NAS website. It has loads of info for families.

BlueBelle Sat 23-Jan-21 08:23:20

The biggest gift you can give it whilst being aware of differences, accept they are only that, a different way of thinking a different way of doing not right not wrong just an alternative
Support the mum and dad and keep to their ways of doing things
Remember melt downs are usually panic and fear stick to as calm a persona as possible in yourself and remember things that seem unreal to us may be very real and uncomfortable to them perhaps clothing that touches the body or hearing sounds we don’t hear or can easily wipe out
You don’t say your grandchild’s age or if it was a surprise ?

PollyDolly Sat 23-Jan-21 08:36:12

BlueBelle just commented exactly what I was thinking! Be supportive and above all, communicate with each other.

Ann Hegerty is Autistic and I believe she has a degree in languages ( I might be wrong but don't shoot me GNetters ). She is also a very intelligent and articulate lady.

Don't despair over the "diagnosis", enjoy your grandchild and with the right support and buckets & buckets of family of family love will grow into an amazing adult, I'm sure.

sodapop Sat 23-Jan-21 08:49:41

Stella1949 put it very well Willow your love and support will be very important to the family.

GagaJo Sat 23-Jan-21 08:49:48

There are many men high up in academia who are widely believed to be autistic. Absolutely brilliant in their fields.

There are so many ways to be human. I don't know why we fixate on 'the norm' really.

BlueBelle Sat 23-Jan-21 09:25:31

My friends husband is a top consultant and on the autistic spectrum it is absolutely NOTHING to do with intelligence it is more about over active areas of the brain causing reactions that are quite normal to the person but deemed un normal by society (who the heck’s needs normal or even knows what normal is) and if they are living outside what is condiered ‘right’ it can be very very frightening and not understandable world for them
I d be interested to hear from. willow what age the child is and what manifest itself to seek a diagnosis

Humbertbear Sat 23-Jan-21 09:29:30

My DS and DiL have two children on the spectrum and have made it very clear that there is nothing we can ‘do’ other than love the children and just treat them as we do their third child. It can be very difficult and we don’t have the same relationship with the 2 as with their sibling. The main thing is to be prepared to accept them on their own terms. They don’t want to visit us and they don’t always appear on family zooms. The oldest GD made a supreme effort to attend my 70th birthday lunch a couple of years ago and I made it clear that I really appreciated her attendance, albeit that she sat with her headphones in right through the meal.

Willow73 Sat 23-Jan-21 09:51:04

Thank you for all your kind comments. I will look at all the sites you have mentioned. My grandchild is 3 and we thought his behaviour was just his age. We will love him whatever of course .

Sarnia Sat 23-Jan-21 10:34:22

Willow73

Thank you for all your kind comments. I will look at all the sites you have mentioned. My grandchild is 3 and we thought his behaviour was just his age. We will love him whatever of course .

My grandson was 3 when he was diagnosed with autism. At the time it seemed like a death sentence but 8 years on and nothing could be further from the truth. The National Autistic Society is a good place to start with information because the autistic spectrum is huge and the saying 'When you have met 1 autistic child, you have met 1 autistic child' is very true as they differ greatly. If your GS has been diagnosed then I assume he has been assessed by the professionals, such as pediatricians, Speech & Language etc. Autism has a louder voice these days but ask any parent with an autistic child and the majority of them will say they have to battle for everything their child needs in order to progress. It can be a frustrating process at times. My GS has a Statement of Educational Needs (it may have a different title now) and this is a tailor made, legally binding document detailing the provision that the education system has to provide for him to help him achieve his potential. Getting one of these may be your first battle but go for it because it opens doors. If your GS's nearest nursey or school is not the best place for him, his parents can choose the one that will be best for him and they have to take him. Statemented children are usually top of the entry criteria for schools. These are practical things you can put in place. Just as important, however, is unconditional love. Autistics are just wired up differently to us neuro-typicals. I have learned a lot as I have gone along as you and your family will too. I wish you courage and tenacity for the times you need to fight his corner, the understanding of what makes him tick and the fulfillment of watching your much-loved grandson grow.

Greenfinch Sat 23-Jan-21 11:48:10

Our grandson is 13 now but was diagnosed at 3. There was plenty of support available(ask at the GP surgery or the local council) and we paid for Speech Therapy lessons because of his delayed speech but this was a waste of money for him as his speech developed rapidly by itself when he went to school. He has a twin and they have lived with us on and off over the years. As far as possible we treat them the same with some allowances due to his autism. We feel that if he is to survive in the real world he must conform to a certain extent. He still has meltdowns due to anxiety and he gets teased for this at school (he is in mainstream with an autistic unit) and so we are trying to deal with this at home. The main thing is that all children on the spectrum have different needs but their basic one like other children is unconditional love Tough at times but rewarding. We love him to bits and so does his twin sister though she will adamantly deny it!

Thistlelass Tue 26-Jan-21 22:24:08

My 40 year old son is autistic. It was not diagnosed in childhood although he did have developmental delay. He was being 'assessed' from a young age. He also has learning disability, also not identified. His IQ test as a child was indicating him to be in the normal range, ie 100. His adult IQ is 69 meaning he just falls within the learning disabled category. So 98% of the population fair better than him. He has his own flat, cooks very good meals. He also passed his driving test a few years ago, so he has his own car. He is doing okay but the professionals got it wrong. I don't trust them.

Doodle Tue 26-Jan-21 22:34:39

Yes I agree the NAS is a good place to start. I would suggest you read a book called The Reason I Jump (can’t remember who it’s by but you can Google it). It is written by a boy with autism and gives an insight into how he thinks. I found it very useful. The more you read, the more you understand. The more you understand the better you are able to know why your DGC sometimes acts in a certain way.
You would be surprised to know how many of us on GN have children /grandchildren with autism.

muse Tue 26-Jan-21 23:59:45

Lots of very good advice here Willow73. I can't offer any more.

I found out as much as I could so I could be there for my niece and step son with boys that have autism.. My niece has 4 boys, the youngest, now 7. My stepson has a boy, now aged 10. It took nearly 3 years to get him diagnosed. Both boys get full time support at their respective schools.

We also have a friend who adopted two children. The boy (age 5) has autism. They tried to home tutor him for a short while during then pandemic but he has gone back to school (as a vulnerable child). He too has a full time TA.

There was a BBC drama series called "A word" a few years ago. Brilliant and thought provoking. It's still on BBC iPlayer.

nanna8 Wed 27-Jan-21 00:08:37

In a way it is good he has been diagnosed because he will get help. There are so many out there who are just dismissed as ‘naughty’ children.

crazyH Wed 27-Jan-21 00:33:31

What lovely stories and so much help for you , Willow. Good luck with everything and a big hug for your darling grandson.xx

Marilla Wed 27-Jan-21 05:06:30

I learned so much by reading personal accounts written by autistic children and adults. You can become overwhelmed by the amount of information on websites.

HAZBEEN Wed 27-Jan-21 18:31:36

My Grandson was diagnosed as being on the spectrum at 4, he is nearly 20 now. Unfortunately my parents could not accept that he was "different" even when I told them we all are! He has a very high IQ but cannot bear communicating with outsiders only really talking to his Mum and me. He doesn't like to be touched by anyone other than Mum but is such a caring and thoughtful person.
My way of helping my daughter was to be a listening ear and a shoulder to cry on when she needed me, no different really to anyone with adult children! As others have said do your research on Autism but just let them know you are there for them when they need you.

Lolo81 Wed 27-Jan-21 22:56:58

Also recommend checking out the NAS website. There are also some great short video clips on YouTube which give insight into the condition.
My sis in law has (at times) struggled as my nephew has grown and she says that having me there to vent to and reassure her that she is a good mum has been helpful. Just having a shoulder to cry on and being able to have a vent on a bad day is my role in supporting her. Just listening and reassuring.

As you GC’s tics etc become more apparent, the whole family need to be consistent in their communication and approach towards them. My gran struggled to understand why she needed to ask my nephew before touching him, but physical contact was hard for him - so we all asked “would you like a cuddle?”etc and he reacted well to that, unwelcome or unexpected contact would usually cause him a huge amount of stress.

Finally and this may not suit your GC, but a lifesaver for us was the discovery of noise cancelling headphones. My nephew would get overstimulated around too many people/colours/noises etc and my dad let him use his old headphones off the building site to block everything out and calm him down. We did buy him his own pair, but at mum and dads he always wanted my dads ones which looked huge on his tiny wee frame!

Wishing you and your family all the best.

welbeck Wed 27-Jan-21 23:21:37

i don't think any adults should touch/ hug children without their permission.

Doodle Wed 27-Jan-21 23:35:55

There’s lots of good advice here but I just want to point out that not all autistic children have the same needs and sometimes it’s difficult to establish exactly what each child has a problem with. My DGC doesn’t have tics or a problem with noise and is very happy to give cuddles but does have a problem understanding when people are joking. A thoughtless remark meant in jest can cause great hurt. Facial expressions help many of us to understand where others are coming from but many autistic children can’t understand this.
willow your little grandson is obviously loved and that will give him a great base for growing up. Supporting his mum and dad will help a lot.

Lolo81 Thu 28-Jan-21 04:41:44

Welbeck, personally I agree with you and have taught both of my DC about bodily autonomy, however it did cause a bit of a furore with the older generation in my extended family that I wouldn’t make them hug great auntie Jessie or whoever when they saw them annually to say thanks for a Christmas gift. It seemed to confound them that saying no to a hug was even an option - and even when explained it went down like a lead balloon tbh.
It became even more important to us when nephew was diagnosed and is now just second nature within the family.