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

(96 Posts)
mostlymindblown Mon 09-Jan-17 14:55:39

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...

SugarMiceInTheRain Mon 09-Jan-17 15:00:22

Yanbu to feel a bit sad, but having the diagnosis will make her life easier than if she just goes through childhood being misunderstood, with people thinking she's being difficult or badly behaved. DS1 has come on so much since his diagnosis, has developed strategies for dealing with things better and his teachers are supportive. It hasn't stopped him doing anything. Like all children, he has found like-minded friends with whom he enjoys doing geeky stuff - they get together and code/ play computer games and are really happy. Your DN will find her 'tribe' and the diagnosis doesn't change who she is or what she is capable of achieving.

FaithAgain Mon 09-Jan-17 15:01:48

Hi, I'm Faith. I was diagnosed with HFA last year (I'm in my mid 30s). I'll try not to come across as defensive! Yes, being neurodiverse is difficult at times. I swing between embracing who/how I am and wishing I was 'normal'. The main thing is that she's been diagnosed. She'll get help and support which will make her life much easier. My big thing is wishing I'd known sooner. Since I've accepted my diagnosis, I've become much happier, I've found a me job that suits me better. I've had counselling tailored to my needs too which was brilliant.

I see why you're sad about the diagnosis but it's great that she knows. She won't go through life wondering why she's different. In fact, she may have strengths that others don't have! I'd recommend watching videos on YouTube about autism like Sarah Hendrickx who is very positive about living with autism and may help you to understand what it's like for your niece and also to see the positives smile

Crowdblundering Mon 09-Jan-17 15:02:28

My son has this he's fine he's found a little network of geeks at school and hes perfectly happy smile he's nearly 15 now.

Gets the bus to school and wears headphones s headphones to blank it all out.

mandi73 Mon 09-Jan-17 15:02:50

My 3yr old was diagnosed with HFA in December and it's been a huge relief to be honest, at least now we know and can start working with her.
So she'll follow a different path to others, we'll always support and love her and as my 9yr old anounced to her teacher "My sister has Autism which is grand cos normal is sooooo last year" smile

Titsywoo Mon 09-Jan-17 15:04:46

She won't necessarily have a harder life. Ds has HFA and he is fine. Struggles with a few things but dd who is NT struggles with anxiety.

I'd personally be upset if someone told me they were sad ds has autism. I see it as a bit of a difference not a terrible illness.

Sorry you feel sad but chances are things will be just fine for her.

BackforGood Mon 09-Jan-17 15:05:08

YABU to be sad at her having a diagnosis.
If that is what she has, then it's much better to have it diagnosed so a) she can understand why she has differences in some areas of her life, and b) so she can access appropriate support.
I also know several highly successful adults with HFA, who have no reason to feel sad about it.

FaithAgain Mon 09-Jan-17 15:08:16

I'm educated to Masters level and have held down a successful career for 9 years (and that was before my diagnosis).

JoffreyBaratheon Mon 09-Jan-17 15:11:59

Of course you're sad. That's utterly normal. And this feeling won't go away for a while so just work through it. I remember the day we got my son's diagnosis - atypical autism and severde dyspraxia, as well as another physical condition - and after we left the consultant's clinic, we were just walking round numb, in a daze. I can recall walking into Woolworths and just blindly stumbling about, wanting to be out of the dr's but not wanting to go home, because that made it real. Husband and I cried many a tear.

Son was statemented before he was 3 (couldn't talk at all) and only given the actual diagnosis several years later - maybe when he was 5 or 6..?

He's now 23. That screaming little wreck who couldn't speak a word til he was 4 or 5 and young man who couldn't read til he was 17? Now at university in his 2nd year and getting 2.1s and even a couple of % from a First, in his last piece of work. He has a beautiful, lovely girlfriend. He has a big circle of supportive friends.

He left school without a single GCSE then spent 5 years at college, til he got to the point he was ready for uni. If you'd told me, that day he was diagnosed, that one day he'd be at uni, loving it, and thriving - I honestly would have never believed you.

What followed after diagnosis were the worst few years of our life - it totally damaged us as a family, dealing with it and coming to terms with it. But now we are still all together and wouldn't change a thing - not even the hard stuff that followed as a result of the diagnosis (husband and I handled it in different ways). So I won't bullshit you and say this is easy. But it's doable and the way I see it is I was privileged to have him as a son, and be given this chance to do my best for him. These things are only given to those of us strong enough to bear it. Is another comforting fiction I find helpful. wink

JessicaEccles Mon 09-Jan-17 15:14:03

TBH, better than going throughout life without a diagnosis.....

mostlymindblown Mon 09-Jan-17 15:17:11

Thanks for all the supportive messages!

I am a bit of a massive worrier so it is reassuring to hear of positive stories.

Yes, my Dsis says it is a relief in a way to have confirmation as then we can move forward with support and helping develop coping strategies.

Will definitely have a look at Sarah Hendrickx, thanks Faith.

Time to do some research I think!

Clandestino Mon 09-Jan-17 15:17:36

She didn't get it suddenly, she just got a name for an existing condition. That puts her in a much better position. Also, a HFA certainly isn't the end of the world.

SilenceOfThePrams Mon 09-Jan-17 15:20:01

Please don't tell her parents how sad you are about it. They'll be inundated with people saying how awful it is, what a horrid life it's going to be for all of them, and other negative stereotypes.

Channel your sadness into reading up on the condition, be available for support, if your family are using specific techniques to help their child, then back them up and offer to help.

Many of the most interesting people I know have autism, hopefully your niece will also be one of life's interesting people.

OohhItsNotHoxton Mon 09-Jan-17 15:20:03

Some of the very best people I know are HFA.
Seriously it's not a bad thing.

GreatFuckability Mon 09-Jan-17 15:22:18

joffrey what a lovely post. I have a son who whilst he doesn't have ASD has learning disabilities and your post has given me hope where his future seems bleak sometimes. so thank you.

MyNewUserNameIsSecret Mon 09-Jan-17 15:24:36

Wow JeffreyBaratheon what a amazing son you have. Your post brought a tear to my eye which is something that usually never happens. You must be so happy for him.

OP. - I think it's normal to feel sad and a bit worried but hopefully you will all get used to it and it will just become become a normal part of your lives.

aprilanne Mon 09-Jan-17 15:25:59

dont feel sad its not the end of the world .my 17 year old has high functioning autism yes socially they are sometimes a disaster.but most are an average IQ if not above .i always say to folk think sheldon cooper from the big bang theory .at least you will always be told the truth sugaring any pills they dont do but its not bad embarresing sometimes but you learn to live with it .

mostlymindblown Mon 09-Jan-17 15:36:32

Just to clarify, I have been only positive and pro-active when discussing with Dsis. In fact the main concern is explaining to our DM as she is able to catastrophise over the smallest things so her initial response might not be helpful..

Any suggestions for sources of rational and clear (and accurate) information which would aid in explaining would be very helpful!

The sadness I have is similar to the feeling I get with my DS, that I want to protect and shield him from any hurt and disappointments but I know I can't (I would love to protect everyone from this tbh)

mostlymindblown Mon 09-Jan-17 15:39:09

and JoffreyBaratheon, wow. Thanks for sharing, you must be very proud.

(Can't get enough of the comfortable fictions - keep them coming!)

PolterGoose Mon 09-Jan-17 15:42:45

Message withdrawn at poster's request.

lotsawobblybits Mon 09-Jan-17 15:43:54

My DP has HFA (late diagnosis) I won't lie there have been some bumps but on the whole we have a very happy life together. We make allowances and our nearest and dearest understand and accept that is just the way he is, he masks well which helps.

He has a good Job, many friends & hobbies. His take on the world is fascinating and refreshing. We have coping mechanisms and normally I can spot if he is flagging, but knowing has made this all easier.

Basically, I want to reassure you not to worry. It will be challenging at times, but so can life for a hell of a lot of other people, try not to see this as negative but positive that there will be help for her along the way.

aprilanne Mon 09-Jan-17 15:43:56

hi you will get good information from the national autistic society they will send you loads of info and they do work shops .these are usually free or some you have to pay but to be honest its not expensive and they are really helpful .they can tell when there next one near you will be .but yes older people seem to panic and doom monger a bit .my inlaws a bit like that .i really panicked when my youngest diagnosed but he now has a supported apprenticeship .so they can life a full life they just need a bit of more work and understanding .

MeadowHay Mon 09-Jan-17 15:53:16

Hi, I'm 23 and have Asperger's Syndrome. I was diagnosed only about 2 years ago. It is really positive that your DN has been diagnosed so early because it means she will be better able to access support throughout schooling etc than people like me who were diagnosed so late and that will make a big difference to her quality of life I think. Having AS has its challenges but there are many things I can do well and having the support of my DH is absolutely invaluable in me maintaining a decent quality of life. In terms of milestones as well, obviously everyone on the ASpectrum is different, but academically I excelled at school despite not even being diagnosed. I was recently diagnosed with dyslexia and dyscalculia as well which is quite remarkable given how fantastic I did at GCSE for example. I got good A-Levels too, I'm at university now on track for a 2:1 and even did a year abroad last year (DH came with me and I wouldn't have been able to do that independantly of him but I managed with the support). I also have a part-time job in my SU and I'm hoping to enter full-time employment after I graduate this summer, I'm not sure if I will be able to or not as I have acompnaying mental health difficulties (depression but most significantly quite severe anxiety) but I will try my best and see really. I can't emphasise how important support is though. I get Disabled Students Allowances at Uni which pay for me to have regular mentoring sessions with specialists for example and I have no doubt that I wouldn't be doing so well on my degree if I didn't have access to that. So diagnosis is definitely A Good Thing. smile

Rixera Mon 09-Jan-17 15:57:05

My brother hasn't been held back or had his life made harder, he's studying physics at uni and doing fantastically smile he was more popular than me in school as he found a happy group of geeks to play computer games with!

BestZebbie Mon 09-Jan-17 16:00:19

About 1 in 200 university students has high functioning autism or Asperger syndrome(1). This is compared to being just over 1 in 100 of the UK population(2), eg: half go to university. That is an equal or greater uptake of higher education than the population as a whole(3).

1)http://www.undergraduate.study.cam.ac.uk/files/publications/undergrad_admissions_statistics_2014_cycle.pdf
2) www.autism.org.uk/about/what-is/myths-facts-stats.aspx
3) www.theguardian.com/higher-education-network/blog/2013/jun/04/higher-education-participation-data-analysis

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