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Autism

(86 Posts)
Sielha Sun 05-Aug-18 20:56:07

Have posted before about this when my grandson was 8 months old. He is now 18 months old and showing very definite signs of autism (hand flapping, no language skills, walking on tiptoes). My daughter has today expressed her concerns and is going to seek medical advice this week. I am devastated but know that we must accept it if this is the case. I am worried though that we will not get a formal diagnosis until he is about 3 and everything I read says that the earlier you get help, the better the outcome. To add to this, my husband is in hospital recovering from a serious injury and I can’t share it with him for fear of hindering his recovery. Am sitting in the garden drinking wine and trying to deal with everything. Do most of us grans carry on having problems when we think life should be getting easier?!!!!

Iam64 Mon 06-Aug-18 19:04:30

I'm not sure how an early diagnosis of autism an lead to more problems for the parents. My grandson wasn't diagnosed till age 8 - it would have been very helpful to have had an earlier diagnosis. It would have stopped him being labelled as 'disruptive' at school, it would have reassured my daughter that her relationship break down wasn't the cause of his 'disruptive' behaviour and would have ensured he got the much needed support earlier in his life.
I'm also unsure what the "full panoply of support" that becomes available means. Support is vanishingly rare. It depends on the level of assessed need, the goal posts move ever higher in that respect.
My grandson is one of those "high functioning" people. He's very bright, interesting but socially totally isolated. thank goodness for the internet where he's found some of his people.
I didn't find the Holland- Italy story helpful either. Apologies if this post seems very negative. I don't feel negatively towards my grandson, or the many other children and adults I've known who are diagnosed as on the spectrum.

CardiffJaguar Mon 06-Aug-18 18:46:07

A diagnosis of autism is not easy at that age and may lead to more problems for the parents. As someone who has experience of late diagnoses ( age 30 and upwards) my feeling is that a diagnosis at school age is preferable when the full panoply of support becomes available. Meanwhile do not worry too much; there is nothing you can do and if any eventual diagnosis is for Asperger or high functioning autism then the child will be able to benefit from all he available education and may well surprise you as an extremely capable person.

Misspips Mon 06-Aug-18 18:40:31

My GS is nearly 15 .Life is challenging but the one piece of advice I would give is fight for diagnosis ,help etc. Services appear to vary according to where you live and local authorities can be selective in their provision .Too many departments can be involved and they do not talk to one another .Good luck and best wishes to DH for a speedy recovery.

Sielha Mon 06-Aug-18 17:37:16

Lots of great advice, thanks to everyone for trying to help. I will update in due course x

Bluegal Mon 06-Aug-18 17:24:00

I agree with lemongrove, sandwichgeneration. There are a lot of people who do like it (including me) but not everyone will do the same as not everyone appreciates the same type of advice. Somebody mentioned they hated anybody mentioning God. When my first grandson died at 2 days my daughter received a card which simply said "I guess God just has other plans for you". It didn't register with my daughter but it brought me a lot of comfort at the time (and yes he certainly did have other plans....but won't go into all that now).

What am getting at is you can only try and if your help/advice is not well received by one, it will be by another.

I really hope it hasn't put you off posting?

lemongrove Mon 06-Aug-18 17:19:39

And in any case it wasn’t nina who didn’t like the story, in fact she did like it and said so.

lemongrove Mon 06-Aug-18 17:16:55

For goodness sake sandwich you can’t expect everyone to like a post surely?
Some did, some didn’t....it wasn’t a criticism of you personally.

sandwichgeneration Mon 06-Aug-18 17:00:03

Gosh. I put up the "story" - sorry ninathenana that I made an error - in case it could be of some help. For those who don't like it, ignore it. It helped me at times but obviously it doesn't solve the unsolvable. Autism is lifelong and fears about the future are always there. I have to live with that too. However, I didn't realise there would be hostility. It was my first ever post. I shan't bother again. There is enough anguish without online criticism and derogatory comments.

luluaugust Mon 06-Aug-18 16:59:33

I am afraid the answer to your question is yes the problems keep popping up regardless of age. From other posts we can all see retirement isn't always all we hoped. All good wishes for your husband's swift return to health, when I am sure you will be able to support each other, your DD and GS.

Willow500 Mon 06-Aug-18 16:54:29

I too have a 4 year old grandson who has just been diagnosed due to his parents being very concerned about the traits he was showing. I posted on here a couple of weeks ago about it and got such positive responses which I passed on to my son (they are in NZ) - he was extremely grateful for the information and the knowledge that these children go on to lead productive and positive lives.

I hope your daughter gets the help she asks for - an early diagnosis is helpful for all concerned. I hope your husband's recovery continues quickly - keep posing on here as it does help to share.

IvvieN Mon 06-Aug-18 16:42:15

Good luck, hope your husband gets better soon and things start to improve all round for you - all of us Grans and Nans are rooting for you xx

GabriellaG Mon 06-Aug-18 15:20:15

I agree with Doodle although frankly, I've no experience of Autism in family or friends.
Please don't serve yourself a huge helping of worry. Things pan out in the best way possible if you just do what you can and surmount obstacles when you reach them.
I wish you and your family all the very best and your husband a speedy recovery. shamrockflowers

Hm999 Mon 06-Aug-18 14:43:06

Hope your husband is well along the road to recovery. Personally I would try to think of a friend you can share things with.
Regarding DGS, contact local CAMHS (Child and adolescent mental health service) and find out what is available re diagnosis, support and special nursery provision. (This may vary from area to area) If they refer you to local authority, take the name of the person you are talking to, ask for a name or job title and phone number of who you should contact.
I'm sure I heard something today on BBC radio news about trying to get CAMHS help down to 4 weeks.
Be pro-active and good luck.

grannybuy Mon 06-Aug-18 13:37:03

I quite like the Holland/Italy analogy. Whether we like it or not, it is apt. My son ( now 43 ) has Down's Syndrome, and when we were told, we were, of course, disappointed and upset. At that point, we had a normal, healthy two year old daughter, and we were happy with our lives. My attitude was that we hadn't lost anything that we already had ie our lovely daughter, our parents and siblings or our good health and reasonable security. We had received 'something' that wasn't what we expected, so we had to accept and adapt - and rise to the challenge. That overriding thought of not having lost the joys in our lives kept me going during sad and difficult days. So, we didn't get to Italy, but we at least were able to go to Holland.

Overthehills Mon 06-Aug-18 13:32:55

I know a little about autism, though not from personal experience, and Jane10’s post is excellent. But yes, Seilha, we grannies do have a lot to deal with!

Brigidsdaughter Mon 06-Aug-18 13:17:07

nina thanks

ninathenana Mon 06-Aug-18 13:15:20

We've been there ann.
Our son has never had a true friend. All through school he was lonely and as a teen there were a couple of boys who used him (getting him to buy beers etc) for a few months until I found out and talked to him about it. He decided to cut contact.
It is heartbreaking to see a 27 y.o. who has zero social life and no job.

icanhandthemback Mon 06-Aug-18 13:12:24

Sielha, at least your family are aware there is a problem so can start strategising and learning about how to facilitate your GS being the best adult he can be. My GS is the same, coming up to 3 and his parents are in complete denial although as I was at a meeting held with a speech therapist, I was able to subtly push for assessment which he has soon. I think my DS knows but doesn't want to face it because he will have to browbeat his DW into facing it. It's a very difficult situation. My grandson has all the red flags your DGS has so I know how much you will be worried. I sometimes feel quite sick with worry but I am sure, whatever is wrong, we will cope in the long run.

annsixty Mon 06-Aug-18 12:37:30

I am so pleased that other posters see the other side to the story as I posted upthread.
To see my GS crying every night because no-one in his class will play with him because he is such a serious child is heart breaking for his parents.

Bluegal Mon 06-Aug-18 12:33:22

I like the Holland story too. But I do find inspiration in lots of quote. I don’t feel it’s set out to minimise anybody’s feelings or experiences rather just pointing out we can’t always plan, as life is full of twists and turns. Setting off on another path is not always the disappointment at first feared. Well that’s what I get from it anyway and totally agree.

lemongrove Mon 06-Aug-18 12:20:37

I don’t care for the Holland story either.
When your eight year old is screaming and punching you in the face ( for example) it’s hard to put up with anything a bit twee.
Not all autistic children will do that of course, some will do worse and others better.
For my DD and son, it’s not a matter of delightfully quirky,
It’s anger/meltdowns/ fear / physical abuse/ verbal abuse at times.
On top of that, much worry for his future when all of us aren’t around anymore.

ninathenana Mon 06-Aug-18 12:15:34

Poem ??? Silly me, it's a story

ajanela Mon 06-Aug-18 12:13:23

Also have autistic GS. At the moment it is thought 1-100 people are on the spectrum. Could be more as girls are better at covering up and copping with the social interaction.

Yes, we do have to maybe change out vision for the child, and they may need more of our time, love and friendship. We have to learn their ways but really we have to do that with everyone.

I love the post by sandwichgeneration.

ninathenana Mon 06-Aug-18 12:12:45

Bridgedsdaughter O'm surprised at your groups feelings for the Holland story but of course you are all entitled to your opinion.

BTW to get bold print type * nina * without the spaces nina smile

DotMH1901 Mon 06-Aug-18 12:09:23

A friend has a daughter who has Down Syndrome and a younger son who is autistic. They have both grown into lovely young adults and are currently both at college. Yes, they have needed a lot of support over the years but their parents are (rightly) very proud of what their children have and are achieving. It might help to join a support group - there are ones for parents/children/grandparents or multi level ones open to anyone. Hope your DGS and DD get the support they will need x