My fears confirmed.

Sorry to hear that icanhandthemback we were in the same position as you years ago ( DGS getting diagnosis of autism aged about 3.) DD and SIL although prepared for it, were still shocked when it came, and yes, the sense of grief and shock for parents is very real, they have ‘lost’ the child they thought they may have in the future, it’s a natural reaction.
Yes, they came to terms with it, and yes their lives have been
So difficult ( awful at times) and they don’t know what the outcome will be, will he ever have a job or a friend etc.
My DD said a few years ago ‘if one more well meaning person says he will grow out of it, or that autistic children are delightfully quirky,I shall punch them!’
All that said, all autistic children are not the same, and some have co-morbid conditions as well as their own character, and the spectrum is a broad one.
Parents must be prepared for a fight education wise though and be determined to get the best outcome they can.

AlaskaLady and PECS, thank you for your comments. I am currently trying to balance my frustration with my DIL and DS about filling in the forms that the professionals have sent and understanding that they are genuinely struggling with the diagnosis. They are still hoping against hope that the professionals are wrong and it will all go away.
My DS cannot even say the word "autistic" in relation to my DGS. I feel for them but I do think if they just got on with it, they'd find the weight of the world wasn't hanging over them. My DIL feels that it is just a "nasty little label that society inflicts on children" and once he learns to talk, all his problems will be resolved. Fortunately, I find myself speechless at these points so I don't express my frustration. My only thought is that this beautiful little boy should get all the help available as early as possible. To be fair, and I try to be, all this coincides when DIL has just started an exciting new job and I think that burying herself in that is certainly a more positive experience for her than thinking about the autism. She doesn't have any family support so it must be extremely harrowing for her and I get the impression that this may have put an unbearable strain on the marriage. She has struggled with depression after her mother's death a couple of years ago which has been hard for my son. He is now struggling with depression although he has been proactive about sorting that out so maybe he will feel more able to cope shortly. You think when your children have grown up your job is done but it just seems that their problems get bigger!

My DD2 had to open discussions yesterday with parents of a little boy in her class that she suspects certainly has language and communication delay and is possibly on the AS. She was so concerned as she is aware how tough it can be for parents to see or accept but she knows that it is better for the child to be properly assessed sooner rather than later so additional support can be found if it is needed.

Hi, I’m new here at gransnet. I came across this issue and thought I would chime in.

First, you are a wonderful and caring woman. Just as my Mother-In-Law was when she suggested that my daughter might need speech therapy. The reason that we could not see my child’s limitations is because we were too close to the situation. Being with her every day we had slowly adjusted to her world. Since my Mother-in-Law only saw her once a year at best, she could see the issue crystal clear.

We did not know that our lovely daughter had Aspergers, until I read a book suggested by my friend, The Curious Incident of the Dog in the Night-Time, it’s a 2003 mystery novel by Mark Haddon. We had her tested for autism.

Upon hearing the news that our beautiful, intelligent, perfect, daughter had Aspergers we more or less went through the five stages of grief and loss. The loss of the person we had envisioned her becoming. It took some time to realize that she is perfect just the way God has made her. She is now a beautiful, intelligent, perfect 25 year old young lady who takes a few credits every semester at college. We tried a full course load, but she could not deal with the stress. She has never held a job, but she has helped me volunteer for a local dog rescue group. She lives at home with us. It’s very sad that she has no local friends at this time, but she only leaves the house for school, and shopping with us, so it’s not hard to see why she is lacking friends currently.

Your grandson will be fine. We really didn’t get much support for our daughter because people were just hearing about this, but now there is a lot of supportive services and education to help families.

My advice to you and the rest of the family, just continue to love your grandson. Enter his world with him, don’t expect him to join yours because our world is full of intense sights, sounds, and even taste can be easily overwhelming for those on the spectrum. Your grandson is not stupid, in fact he just may be very logical, a bit to a lot OCD, and he feels most soothed with consistent schedules and routine. Give him advanced warning for all changes in routine or else he may have a meltdown. When he has a meltdown, encourage him to go to his room until he feels better.

The more family who supports and is very patient trying to understand your little boy, the more he will feel understood and loved.

Best wishes!

yes a good link OldMeg.
I've always thought that most people have signs of autism, we're all different, there's no such thing as a perfect brain.
Icanhandthem back - glad to see you're less unhappy about it now.
As for all children, find his strong points and work on those.

I have to say that my DGS is a beautiful little boy who is so cheeky. My main worry is that he will be unhappy because so many with ASD suffer from anxiety. My brother had severe anxiety and in the end it killed him. My daughter is crippled with it too which makes life difficult for her and the rest of her family.
Right now, our real challenge is communication but if we can make that easier, he will be on his way to a happier life. I am finding it much easier to relax with him knowing that help is at hand in the near future too.

GS1 is ASD and ADHD. His primary school headmaster's final comment was "The world needs more people like him". His secondary school teacher says he's a " Colourful Personality" Sounds pretty good to me!

The only thing I'd hope to change for DS is his dibilitating anxiety

Summermary

If a cure became available I wouldn't want to change my husband either.

My dgs has autism. As my friend said if a cure was found tomorrow she would not change her child. Quirky, often very gifted, think differently. We found out about condition at school. Absolutely adore my little gs

OldMeg, the only problem for me now I have read the page you linked, is that now I get the feeling we could all have our dots anywhere on that wheel and there's no such thing as neurotypical!

OldMeg, that is a great way of understanding it a little better.
Once again, thank you all for your kind thoughts.

ican it will be a shock for parents and often like a type of bereavement too. It may take time for both parents to accept their beautiful boy may have more stuggles to cope with than most other kids. They will need your love and support & you sound as if you are well placed to be there for them. He is still the little boy they love to pieces.

Because everyone talks about a ‘spectrum’ most people think this disorder is linear. It’s not

Have a read of this LINK it will explain it so well and may allay many of your fears ICHTB

By the sounds of it you’re a very, sensible and supportive mum, mum-in-law and granny - they’re lucky to have you on side. I wish you well as you continue to be there for them all. I hope your little chap gets the best of support to help him as he grows up.

I will certainly look for that book, Doodle, and I have been doing lots of reading, watching and relaxing more about autism.
oldbatty, my son immediately answered his own question about whether I should have spelled it out. He said he completely understood why it would have been difficult and maybe it would have worried him longer without knowing he was definitely going to get support for my DGS. He felt more stupid than cross especially when everybody else has said they did wonder when he has told them. He was only 23 when his wife fell pregnant and he has nothing to measure his son against. His wife is Early Years trained so he was reassured by her every time I raised a concern. I certainly wasn't daft enough to tell him that I thought his wife was wrong! I have the benefit of raising 6 children and teaching experience so maybe things were easier for me to see. I sort of admire his loyalty to his wife even though it was frustrating at times. Still, he did tell me that I was the second most important person in the world the day he got married (I slipped into 3rd place the day his son was born) so I should have expected it.

My grandson who is now 14 didn't talk until he was 5 and even with speech therapy was very difficult to understand. He finally started talking properly at the be of 7.
He hated infants school and his teacher who couldn't cope with him and was finally diagnosedv with Asperger's at 8.
He was considered a no hopep and when entering secondary school had a dreadful report. He was finally put under special measures and haxent looked back, He has now been accepted for college when he has sat his GCSE and this new term will go on day release to college to get him used to the tutor's and students. It has already been decided that he will do a BTec in electronics. So although since pubity has kicked in he has shown more Asperger's tendency he is still a delightful funny young man who we all love and admire.
Be there with your love and support and be amazed by a very special person.

icanhandthemback I can remember the day I found out my DGS was autistic. I couldn't believe it. I was so shocked and worried for him and his parents. Many years have passes since then and things have not been easy but you have the knowledge now and that is a big thing. You will not wonder why he behaves as he does, you will know. You will be able to help him because you know. His parents will be able to get him help because they know.
All autistic children are different so don't worry now about what the future will hold because you have no idea what your DGS will be. Just like any other grandparent really.
The best advice I can give is to read a book called "The reason I jump" (sorry can't remember who it is written by). Please, please read this. I promise you it will help you understand so much (it was written by a 13 year old autistic boy). All I will say is that I have an autistic grandson who I love to the moon and back. He is funny, georgous (difficult and stubborn ?) a wonderful boy and I wouldn't swap him for anything. Love your boy is the best you can do for him.

I think your son is being unreasonable. Its not down to you to be spelling things out.

Thank you BlueBelle, I was just trying to explain where I was coming from. I read your posts throughout the site and, I usually agree with you or at least find the points where we differ, reasonably put.

My post wasn’t meant as a criticism of your feelings but more as an encouragement Ican I m sorry if you felt it was you have worried about it for a such a long time sometimes worrying is worse than knowing however I can certainly understand your worries and fears about your son and daughter in laws depressions, that is definitely most concerning
I hope you little chap continues to bring everyone joy

BlueBelle, when I talk about my worst fears, it is specifically in context to autism because actually, I don't think anybody would want that for their family. That certainly doesn't mean that I think any less of him, in fact it may be that his successes will mean so much more. I absolutely adore his cheeky smile, dancing eyes and wicked sense of humour and, although I feel that it is a positive thing to have a diagnosis so we can help him to the best of his ability, I can't help seeing the downsides either, mainly for his parents who have already having a pretty exhausting time. I use the word grief because the Specialist pointed out that, although no-one has died, there is a getting to grips with the reality and it is similar to the grief process.
My DIL is just coming out of a long period of depression, my Son has just been prescribed anti-depressants so when he cries, I can't help crying too and feeling helpless. It is only a blip in my mainly positive stance for them and certainly not in front of them. We will cope, we've always had a "You can't lie down and die," approach but it doesn't mean that a couple of days after diagnosis we are finding it easy.
Meanwhile, in my most positive moments I rejoice with this:
nowthisnews.com/videos/news/what-you-need-to-know-about-neurodiversity.
It seems like a wonderful way of looking at this.

You can being supportive Ican and that is a lot. When my father's wife's son and his wife had a daughter with Downs Syndrome their attitude basically was that they could try again and do better next time (and the grandmother ran a kindergarten which had a number of special needs children so she knew better).
You are there for your son to load his unhappiness on. Not a pleasant role but probably not one that anyone else can do. I sounds as if they are lucky to have you and the other support they have.

Please don’t feel negative about this little mans diagnosis when I read your title Worst fears confirmed I thought someone had a terminal illness
You talk of being in grief and his affliction I know you are disappointed and would rather have had a mainstream grandson but you now have a unique one and that needs you to be joyous
My friends little chap didn’t start talking until he was 6 he is only just toilet trained he also has numerous food allergies but he is so happy so bright loves the outdoor world and is like a little whirlwind of delight, my other friend has an adult downs son she has said her life is different to how she imagined and sometimes hard but she wouldn’t change an ounce of him Many geniuses are on the autistic spectrum many top technicians, surgeons inventors etc have Aspergers these are just names they don’t define the child or the person
If you are worried for the future it will be felt by your son your daughter in law and your baby boy even if you don’t say a word how you react will define how he acts believe in him I think your daughter in law is right forget diagnosis and work around his strengths and weaknesses just as you would with any child, if later he needs more help in any area it will be there for him
Take each day as it comes and very good luck

Any special needs diagnosis can be hard to accept. Admittedly there is a broad range of "normal" and there's a fine line between "normal" and "special needs".

In addition, a diagnosis can often be a double-edged sword. It opens doors to additional funding and programs, but also means that a child is "labelled" as having a problem.

My husband is officially diagnosed as having Asperger's although we suspect he is actually high-functioning autistic. (He was diagnosed more than 25 years ago and the guidelines were not nearly as developed as they are now.) Hubby holds down a full-time job and is a great dad. He also managed to hold down a job, purchase a house, and manage as a single father before we got together - in a country to which he had emigrated and where he had very little support available.

DIL is likely grieving right now. That's understandable. She may need time to come around.