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

[mostlymindblown]

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...

DS1 is 11 and has ASD. He struggles in some ways, flies in others. He has friends and a social life and enjoys pretty much everything he does. He finds joy and happiness everywhere, he has the sunniest disposition of any child I've ever met and empathises in a way you wouldn't think any 11 year old could. He is articulate, intelligent and bright. He can argue his corner respectfully, treats women properly and has beautiful manners. Admittedly he can also be an utter asshat at times but I don't know an 11 year old who can't.

Ultimately, those differences will mean your family approach situations differently from time to time. It means you'll cope differently, you'll respond differently and you might have to grow a thicker skin than most for when well-meaning relatives discuss the ASD-MMR bollocks (it's frowned-upon to shout "Oh fuck off with your nonsense, Susan" at a dinner party for your grandparents Ruby wedding). But life goes on. You find joy in the oddest of places, you find support where you might not expect it and a life with ASD is absolutely not any less of a life. I wouldn't change a thing about DS1 because without his ASD he wouldn't be half so marvellous, frustrating and wonderful.

Gubby, he's entitled to ask for you to be there. And if he instructs you to make the appointment, you can do so. I ring all sorts of people in begs,f if my husband, saying Mrs Furiosa here. Orlando Furioso, my husband, has asked me to make an appointment with you because he is... . sometimes they ask for him to be there to. confirm that he wants this, fine, it's one word, yes. You say clearly that you are not in the driving seat save for arrangements and such support as he wants, that you understand the issues around confidentiality and the relation between him and them .

Then you check that he wants you to attend. In any case you get him there.

When you attend, you sit back from the main area, but you've already practised the discussion and you have an agreed list if questions, prob written down which both of you can refer to, if he misses one out. You remind him. Sometimes he will say " you talk instead of me". Fine, they hear the instruction coming from him. At the end you say, is there anything else, darling? Would you like me to leave the room? Again giving him that freedom and making it clear to them he is the person in control.

We find this works with nearly all professionals save the very blinkered.

In begs? On behalf of.

Whooo, he sounds fabulous! My ten year old is similar! Hilarious , but can be so infuriating too.
Comic timing and hugely entertaining but has no friends his own age as he is so zany. He sings opera at the top of his voice a lot !
He literally does not stop talking though. Gets upset when you ask him to stop . Very wearing
Orlanda thanks.
I will try that with 18 year old DS. Not sure if I will even get him back to college though. Once he has decided he won't do something it's impossible.
He can't stay in the house doing nothing for ever.
He won't do voluntary work. Has no money and no motivation as says he doesn't need any.
I'm at my wits end.
When he is in this mood it is like a lack cloud in our home. He paces about slowly and heavily with his head down , sighing and looking miserable. I can't live like this forever but can't see a way out.
It is making me stressed.

gubyguby would they accept communicating with him by e-mail? Could be a way forward.

Technology is so helpful these days.

I havent tried email. That's a good plan.

I thought I might find my ND homies here

It's really ok to feel sad, happy, whatever you feel. Your dn and her family will no doubt also feel all of those things and it's important that nobody bottles it all up for the sake of appearances, but like everyone said this means she's going to benefit from a more tailored education, greater understanding of herself and of others.

Everyone with ASD is different, just like for the rest of the population - we have just as many varied and different strengths, which can give us the edge more than you'd think.

I'm another in my mid-thirties being referred after all these years wondering why I wasn't like everyone else. I'm actually excited to think I might get a dx because it's like someone finally saying 'yes, you really are different', which to me is a huge compliment!

I've got lifelong friends who've always accepted me as I am, I've got a good degree and I've been an SEN teacher myself, and now I work in a huge organisation and my job is to make things work better for people with disabilities - which we only use as a term because society hasn't caught up to realise that it doesn't have to be a disability at all. I have a level of understanding of the issues that means people come to me for insight and that's an amazing thing considering it wasn't always easy for me to be in employment. It makes me very happy to see so many people on MN who understand that it's not some terrible affliction - I hope it's a sign that change is beginning.

Without my difference I wouldn't have done any of the things I have done, and I wouldn't be the one seeing problems in a new light, thinking of ideas nobody else does, and being expert on things others only scratch the surface of. Maybe I can't always 'read between the lines', but I wrote Requiem in a week!

Guby I was exactly like your 10 year old - I drove my stepfamily up the wall with the near-constant OTT dramatic singing I also was like your 18 yr old though. I twatted about for a bit but then I got bored and went back to college a couple of years later having flunked the first time. This may not be relevant but it was the lack of structure I found hard, you're forced to go to school but even now if something's optional I will find an excuse not to go

DS2 was dx at the same age. It was such a relief to him, he knew he was not the same as the other kids in his class but didn't know why, so to know why was incredible. DH and I were devastated. We were told he would never be independent or live without social support.

He is now 24yo, at university with minimal support and doing very well. We 're so proud that he took his dx, lives well, has a GIRLFRIEND who gets him and loves him, and is the best balanced of all 3 tbh.

gubby I know what you mean re. that maths course - my son had to do that throughout most of his 5 years at college - and also English. He also hated it, and it had very little (OK, ex teacher here, so I'll be brutal) no educational value. But... but he did have good, supportive tutors and more important still, a learning support dept who absolutely were there for him and did all they could to make sure that English and Maths happened, but didn't spoil the rest of his time at college.

We had a choice of 2 colleges, living almost exactly halfway between them (his school had no 6th Form and they failed him anyway, being a mainstream school with no facilities for kids like my son).

So we went to both, and asked a lot of questions and my son also had the final say but we were glad he chose the one he did, because even visiting for an hour or two we picked up the feeling that one was much less relentlessly academic than the other, and also had better Learning Support...

As I said upthread, son couldn't even read til he was 17 (now he is the only one of my sons who reads for pleasure!) And the maths simply wasn't there. But somehow he passed those stupid certificates and of course has never had another mathematical thought again.

I'd really try all you can to find a college as your son has found a subject he loves, and he should be able to do it. I'd 'audition' the learning support folk more than anyone - and ask about that certificate, and precisely how they go about supporting students with that.

I'd say shop around for colleges - find somewhere

Oops computer rbain fart.

What I wasgoing to say was....I'd say shop around for colleges and find somewhere that can assure you they can support him.

brain even, doh!

I have found my people! Recently diagnosed at 24 and proud to have be able to say I am genuinely different, not just feeling like an outsider.

My academic aptitude and ability to imitate got me through school successfully, I scraped my way through a tough degree and began to struggle when I joined the real world. Thanks to my diagnosis I am now holding down my dream job in an investment bank, with the correct support.

With a diagnosis earlier, my 2.2 degree would have been a 2.1 or a 1.1 but what really stands out for me is how much easier it would have been for my parents to bring me up had they understood my brain. It must be incredibly difficult to parent an incredibly bright and seemingly mature child who has a complete lack of control and logic when faced with certain circumstances that most people wouldn't notice (sensory issues etc).

Nowadays I am known at work and with my small but supportice and loyal friendship group for being quirky and different and find these things a massive compliment. My other half was apparently attracted to me being different! Somethings are a struggle and it all ends in tears but most of the time now I am comfortable with myself thanks to my diagnosis and that in itself is a gift. I hope your DN feels the same.

oneofthegrundys love the sound of your DS. The bit about the baby jaguar sounds just like something my DS would say.

OP, I get your feelings of protectiveness. I creid and cried when my DS was diagnosed as I worried about the difficulties he might face. That was me however not him. He is the happiest boy you could meet, sweet natured, always smiling, beginning to make friends (he is only 4). I have high hopes for his future and don't actually find (for us) the ASC causes many negativities - I suppose the worse bit is that he isn't able to tell me about his day, what he did etc when he is away from me so I worry more than I might with my NT children about leaving him. Good communication with the teacher makes this easier. Good luck and try not to say to your sister that this is a sad thing (I know you said upthread you won't). My biggest difficulty is my MIL who is forever referring to him as a "poor boy". He is not a poor boy at all, he has a lovely life, family that love him, a great school, loads of experiences. He just gets another perspective on the world that she doesn't.

Another here who has a DD undergoing assessment for HFA (or aspergers as it used to be known) and is 99% sure I also have it.

It is a huge mix of emotions. It can be difficult but it can also be liberating. A diagnosis means she has to be adjusted for both at school and later in the workplace. Not being diagnosed doesn't make it go away it just makes it harder to manage.

Please do NOT tell her you want to make it all go away. That is absolutely one of the worst things I've had said to me. I've actually distanced myself from some people who have told me they want to "pray it all away". It cuts me in a way I never expected. ASD is a HUGE part of us. Many of the traits basically make up our core personalities. All our quirks and even many of our hobbies are considered ASD traits. When I open up a list of aspie traits it describes 90% of who I am. Saying you want to make it go away feels like you are saying you want to make US go away.

This site has some lists of traits help4aspergers.com/pb/wp_4a3112c8/wp_4a3112c8.html If you read it you will see that so many of them are absolutely core to your nieces personality. There are limitations of being ASD but there are also many benefits. We think differently, NOT incorrectly.

Thank you for that link Helena.
I can recognise many of the items on the list in me.
If the attitude of Mumoftwins was more widespread the world would be a much happier place.

I have an 8yo DS who has just got his ASD diagnosis and I'm starting the ball rolling for mine today in fact!
Having said that in my family there are still old attitudes that prevail. I think in part in that DH has a severely autistic cousin who will need lifelong support and my MIL still has that as her template.
So that is why I'll keep DS's diagnosis under wraps for now, but not too tightly. If it comes out it comes out but it doesn't change who DS is.

I can relate to how you're feeling as that is how I felt when my eldest DS was diagnosed. Since then my other two kids have been diagnosed and I'm going through the diagnostic process myself.

It's really not the worst thing that could happen. There are many positives.

Joffrey , good advice thanks. When you say ask them about the certificate what do you mean?
Do you mean the maths ?
Also which maths did your done pass in the end. Functional skills or a C grade GCSE ?
He's done so well it gives me hope.

Glad you've had some lovely responses here to educate you that a HFA diagnosis for your DN isn't something to be sad about.

Did it occur to you at all that MN members with AS/HFA might feel a bit insulted (or sad themselves) about your thread title? Would you write AIBU to be so sad that DN is gay? Or trans? I don't think you would.

I realise that your thread is coming from a kind place and that you want to support your DSis and DN. Hopefully you're feeling more positive about it having had the answers you've had on the thread. I (and DD) would be pretty insulted if people had been feeling sorry for us when she (or I) was diagnosed. We don't need pity, we need understanding and acceptance.

Everyone knows far more people on the spectrum than they think they do.

It's important to remember that spectrum means spectrum and that many people on the spectrum are "passing for 'normal'," as it were. (Neurotypical)

The weeping, catastrophising and stereotyping is unfortunate because it keeps people in the closet.

Worse thing my nephew had to face was judgemental know it alls.
He struggled with social side of school, but is now living life as a tax lawyer!
Don't fret

Don't be silly Tatter We and are children aren't like gay people or deaf people or any other "normal" people with feelings and shit.

It's absolutely FINE to imply that being just like is an unthinkable tragedy of epic proportions. Happens on here all the time

our^ children

It's not the first time I've seen it, that's for sure, Manumission. I think I understand where the OP is coming from, just thought it was a bit insensitively put.

Hi gubby - I have it somewhere - not sure what it is but it's whatever the Maths and English certification was, they are forced to do at college if they don't have GCSE (so, not the GCSE!) Took him a while and he had to do both English and Maths at first - then later, IIRC, it was just Maths. He does Graphic Design at uni so both were pointless and he really didn't enjoy it, but survived it because his Learning Support tutor in particular, was so brilliant and she went the extra mile for him.

I got the impression - and have heard since - that the other college he could have gone to, are much more focused on results, results, results and so not particularly welcoming to students with special needs and it did seem to us they were much less well geared up. Whilst on the surface, all things appear equal with colleges, I suspect some pay lip service to supporting students with SEN and disabilities - whilst others really excel at it. Could be the place yur son tried fell into the first category?

Manu, whilst being on the spectrum isn't, for everyone, a tragedy of epic proportions, that initial phase of getting the (often hard won) diagnosis then dealing with all the emotional implications of it, for a parent, is a very tough process. And we all handle it differently and, there is no denying, for many it is a bit of a grieving process. At the time my son was diagnosed - it had been obvious for a while there was something intensely difficult going on (He screamed all day - he didn't speak, etc etc) and I had a pretty good idea what it was. But to get the diagnosis in black and white, it was still a blow - at the time. And for a long while afterwards.

I guess part of you is grieving for the child you thought you had/never had. And of course, the future seems uncertain, for your child. My son didn't - at that point in time - seem to have the possible futures, I'd once assumed he'd have.

Plus, 'atypical autism' is a bit of an unknown. We had no way of knowing that little screaming wreck of a child was going to turn into the person he did. If he'd had say, Asperger's, I'd still have felt a similar process, because like it or not, it is difficult for parents to come to terms with even when they were half expecting a diagnosis.

I was very hard headed and knew I'd need to get my son 'labelled' so he could access everything he needed to access in the educational system. So I took him there hoping, in a way, he'd get a label. But it still knocks you sideways.

I don't think any of the parents who have been through it here are trying to imply it is a tragedy of epic proportions - but that period of time when you first get a diagnosis and sort of have to re-align your universe, is not entirely easy to do, either.