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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to be so sad at family member diagnosis of high functioning autism?

95 replies

mostlymindblown · 09/01/2017 14:55

Found out today my 7yo DN is thought to have HFA.

It's not a total shock as she has exhibited traits from a young age and I know it is good that she has an appropriate diagnosis so the right support is in place for her and the family at home and at school.

I guess I just hate the thought of her struggling in life as I love her dearly, shes such a lovely, bright girl. I just want to give her and my Dsis a great big hug and make it all better...

OP posts:
BantyCustards · 09/01/2017 16:02

If the rest of society accepted diversity there would be no need for this 'sadness'.

HardofCleaning · 09/01/2017 16:03

YANBU to feel concerned and a little sad but I think we forget that there are a lot of successful adults today that would have been diagnosed with HFA were they born today. It doesn't mean she'll necessarily struggle, some traits associated with her HFA are positive but it does mean she'll receive help with the aspects of her autism that could cause potential problems for her.

P.S. I feel quite jealous of your Dsis and DN. I'd love my DS to have an aunt that cared so much about him.

TwinkleWilf996 · 09/01/2017 16:08

I am autistic and it's doesn't set me back but I am used to its and I does struggle deal with changes but with routine it's will make me happy and calm

SecretWitch · 09/01/2017 16:10

My 20 year old son has ASD. We did not get a diagnosis for him until he was 14. He suffered in school because of it, being called lazy and unfriendly. Once we had a diagnosis, we were able to help him in many different ways.
He is now a confident and accomplished young man. He travels abroad by himself, including the planning and paying for his trips. He is off to a huge trip at the end of this month. He will be traveling to Japan, Australia, China and Cuba.
I am sorry you dn received this diagnosis but please know she can and will flourish with proper support.

Serin · 09/01/2017 16:10

I think YAB a bit U.

There are far worse things to have.

DH has a PhD, a wife, 3 DC, and is a teacher....Oh and he has ASD too.

We need to celebrate our differences Smile

BantyCustards · 09/01/2017 16:13

Serin hits the nail on the head.

Oblomov16 · 09/01/2017 16:16

I understand the sadness. I think life is quite a bit tougher with autism. I am saddened ds1 has it. I have diabetes and it makes life tougher. I wouldn't wish either on anyone. But not everyone feels like I do.

PolterGoose · 09/01/2017 16:24

This reply has been deleted

Message withdrawn at poster's request.

outabout · 09/01/2017 16:25

Hi
Keep positive. Her 'view' on life may be a bit different to others but still as valid. Read up and learn what her differences are, some may be important, others not. She should get help in the education system but if she is bright that may not even be needed, but she may need a bit of help in certain areas, it all depends.
I think I am 'aspie', certainly the more I look back the more traits (or results of them) I can identify but this realisation has only happened in the few months although I have been told I am 'not normal', I couldn't understand what or why.

JessicaEccles · 09/01/2017 16:47

If the rest of society accepted diversity there would be no need for this 'sadness'.

^^ This.

Want2bSupermum · 09/01/2017 16:48

Count your blessings and not your curses. DS has been diagnosed with ASD. The developmental paed said he is most probably HFA. He is 3 and is playing chess, can do addition, subtraction, multiplication and division and is so very close to reading. He has horrible communication issues and has hypo sensitivity.

If you had told me DS would be performing these tasks 18 months ago I would have never believed you. We got the right therapists and followed through. Our home and family dynamic has changed beyond recognition but it is for the better and it is amazing to see our children thriving.

When DS was diagnosed I didn't really feel sad because I knew something was wrong. The diagnosis completely change the help DS was given. He is in a class with 3 other boys, all of whom are suspected HFA. They feed off each other and their teacher is a saint. My in-laws were all sad and were perplexed by my attitude of being positive. They saw it as a negative. You can't change it. You have to help this child live happily within this world. This diagnosis only helps in achieving that objective because now funding will open up.

Feel sad but please please please, as a parent, I really wish my sister would bloody stop comparing DS to her DS. If money is an issue, talk about how you can help afford the tools therapists use. We have spent thousands on specialist toys and games. We have ipad and a subscription to a speech site that is provided by school. You really need an ipad to get the most out of the program.

Every single day I am so thankful that DS is still developing, that he isn't low functioning and that we have the money to buy help for him. There are low functioning autistic children in DS's unit. Those parents go through hell and the worry they must have about their long term care must be awful.

BestZebbie · 09/01/2017 16:48

PolterGoose: yeah, after I posted I realised I wasn't comparing like with like in the first two stats - the first is the percentage of applicants in one year and the second is the whole population of any age. :-/

Dawndonnaagain · 09/01/2017 17:01

58 with an ASC diagnosis. Educated to a high level.
DS2 Doing his Masters.
DD1 At university, doing a BA.
DD2 Having a year off and then going to do a BSc.
We all have a diagnosis.

OneOfTheGrundys · 09/01/2017 17:05

DS (8) is deaf and had an HFA diagnosis relatively recently.

It hasn't changed him or his behaviour. But it focuses our minds on his needs and his confusion about the world sometimes. DH was upset. It was a shock for him, even though we had been telling everyone for years what our suspicions were.

There's no 'typical' person with HFA. While I enjoy hearing about people with HFA who are brilliant at maths, programming etc, my DS for one doesn't fit that mould. He loves acting, drama, storytelling, writing... and is shocking at maths!

The world is still out there for her OP... she may just find her place in it a little differently.

OneOfTheGrundys · 09/01/2017 17:10

And if I tell you that he's been ill today and told me he felt 'as weak as a baby jaguar who's just been born and who wants to hunt and run but can't yet' (verbatim)! you'll get the cut of his jib!

JessicaEccles · 09/01/2017 17:12

Heh- I am also dreadful at maths. And my father was a maths teacher. I am however obsessed with numbers, and patterns, and space and all that sort of thing.

SauvignonBlanche · 09/01/2017 17:22

YAB a bit U to be 'sad' though it's understandable to worry.

I wouldn't change my DS for anything, I worried before and after his diagnosis but with appropriate support he's doing well and is now living away from home in his second year at university.

His ASD makes some things harder but in other ways it can be a help, he's very focused, determined to get a First.

OneOfTheGrundys · 09/01/2017 17:26

That is interesting Jessica ! I enjoyed the Horizon documentary on autism. I'll have to google it to find the name. It definitely helped me understand it more.

OrlandaFuriosa · 09/01/2017 17:31

Dealing with your DM, she will probably have one of three visions in her mind:

-the non verbal end of the spectrum, which clearly your DN isn't, but this could cause denial and a well it's not from my part if the family sort of attitude,
-The genius, pianist or mathematician, , bullied but eventually wins through - where the worry is , do they?

  • the geek, bullied, unfriended.

Instead, find some great role models for her, of people whom she'll have heard about who are successful in a range of ways.

And then say how brilliant it is to get a diagnosis now. ( it really is, I wish DH had had one as a child), because there will be more understanding and support at school and at home, ability to pattern the mind, train it, in coping strategies, at this age, and to realise you're not alone.

And really important to realise now, not as other pps have after many years, what the issue is, having gone through a lot if life wondering why things don't quite fit or why things are a struggle for you, not others.

Also point out to DN. as appropriate, the brilliant people who have been on the spectrum, that it often seems to take the level of focus that the spectrum provides to create works/activities of genius, and that other people have different neurological differences too. There's a wide range of brains out there and all are valuable.

But DN may need confidence boosting from time to time. You sound like the best sort of aunt, just the person to do it, without the direct baggage of family expectations. Take her out doing what she wants to do, in the way she wants to, only pushing boundaries a little. Be her safe place, her safe adult, where she can email or text you.

And be so grateful that she's in this country in this century, things are far worse in many countries and when DH was growing up, it is a long shadow that gets cast,

gubbygubby · 09/01/2017 17:33

I would love some advice !
DS 18 was diagnosed with Aspergers just a month ago.
He failed all GCSEs except English. Maths has always been terrible.
He started resitting 5 but packed in as he hates maths and it was making him anxious.
Last year he did a 1 year music course and he had to keep on with maths.
As a result of the governments insistence that he must do maths he has given up altogether .
He loves Ancient history and it is the only think he is interested in and he has the most incredible knowledge of it.
He now can't do any courses as he will have to do maths . This makes me very upset and he is at home almost becoming acrophobic and more miserable.
He left college before his diagnosis so I wonder if he could go back and do history and not do maths . There is an autism unit at the college and I rang before the diagnosis to discuss my suspicions about autism but they won't speak to me as DS is just turned 18.
It was so frustrating.
They sent a letter home asking DS to go to the unit and find a certain teacher but DS finds such tasks and approaching unknown people / situations impossible.
Jeffrey how did you manage with your son. It is fantastic and well done to you all !
I feel in limbo. My 10 year old also almost certainly has it and had his ADOS today.
I feel so swamped with it. He is year 6 and I'm desperate for quick diagnosis so I can choose secondary school. The local one is 2000 pupils and has just failed ofstead so I can't send him there.
There is a small boys only private school nearby that is non selective and has about 10 % SEN and are used to boys with ASD and Tourette's im told.
I'm worried about him too .
Sorry for rambling post but feeling lost

Ashvis · 09/01/2017 17:37

Nobody can help how they feel, but when people say things like "oh, how sad" when we tell them about our ds having HFA we always let them know we aren't sad in the slightest. He's different and wonderful. Sure, some things are harder, but some are easier in all honesty. We found the whole diagnosis process quite depressing so we've made a big point of celebrating autism in our house - list on the fridge about all the ways ds is fantastic, positive books about autism for children, and when something good happens (e.g., learning to read faster than peers) we celebrate it a lot - let ds know we are proud of him and he knows how autism affects him. Totally understand concern telling other family members, some of ours have been shit at times, but it's getting better. They are slowly learning more and more about autism and now see the positive aspects of it. If your sister gets offered the Cygnet course (everyone in our area gets offered a place when their child is diagnosed with asc) she could always see about taking your mother too. A friend of mine took her dad when she attended and it's really helped him to see where his grandson is coming from and support my friend. See if there's any local charities who support persons with additional needs, any groups that meet up so kids know they aren't alone (ds is the only one in his nursery with autism so he loves going to groups with other kids with autism too, and great to meet other families who understand where you're at). And agree with the pp who said how lucky your niece and sister are to have such a caring family member!

Want2bSupermum · 09/01/2017 17:50

gubby Its all about the approach. I would think a tutor who has experience of educating SN children coming to the house 2-3 times a week would be a good approach to try. We have a tutor at school for DS that specializes in teaching ASD children and they work through concepts in different ways, helping the child to understand. DS is at the other end of the spectrum and we noticed early on that DS was learning like a parrot but didn't really understand what was going on. The tutor makes sure that he learns and understands.

I am in the US and our school district fully covers the cost of the tutor. I would think that if you start a thread on the special needs board others will know how you can push for your DS to get a specialist tutor to help support him.

Xmasbaby11 · 09/01/2017 17:51

It's understandable to feel sad at this stage. Dd is 5 and possibly hfa (being seen by paediatrician). If I had the choice between diagnosis and being told she'd grow out of it, of course I'd prefer her to grow out of it, because I'm her mother and I don't want her life to be difficult.

OhGodWhatTheHellNow · 09/01/2017 17:51

When Db was diagnosed at 3, back in the eighties, it came with a whole list of what he'd never do, most of which was bollocks. He has had the same trials and tribulations as the rest of us, he's not a genius but he's ok.

gubbygubby · 09/01/2017 18:05

Thanks want2b