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Autism secret... For how long?

63 replies

sama190 · 13/09/2015 20:39

Hello all,

I just wanted to post about an issue I have. My son was diagnosed with asd back in January. He is a very bright and social boy. I knew from early on that something wasn't right I was a first time mum but cannot explain how I just 'knew' mother instinct is very weird!!

My husband was always saying I'm such a worry freak and my mum too when my son had a speech delay. Meanwhile I was driving myself insane with searching on the internet I seriously became not normally obsessed with searches it was a really mad time.

We decided to have my son assessed for asd the waiting lists were very short and we got a diagnosis within a few months. Me and my husband however have decided not tell anyone. I am so so close with my parents/ siblings however I can't break it to them they will be heartbroken! He is the first grand child and they adore him! My son has made such great progress that my friends tell me till now 'remember that time a few years ago when you were so worried about him look at him now so sociable and talkative', I just can't say well actually we have a diagnosis...
Our community is very tight and I know that people are narrow minded to be honest I was a had a stereotype of what autism was/is and I really can't deal with anyone's pity, I hate that feeling.

What's more concerning is after reading soo much about autism I am almost positive my brother has some sort of autistic traits.. He's just had a child now..

I was wondering how long we can keep this for. I was just telling my husband yesterday it can't be a secret forever, what happens when we have to tell him etc. He is getting extra support at school and his school is outstanding but we don't have an ehc plan in place he is doing well without it, though they are aware of his diagnosis..

I love my son more than life itself and literally did not think I could live anyone or anything as much as I love him.. He is soo cute, handsome and is such a character that's how people describe him!

I don't know what I want from this post but I just had to let this out!

OP posts:
PolterGoose · 13/09/2015 21:14

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HoursTurnIntoDays · 13/09/2015 21:22

If it's not obvious to them then there's no particular need to tell them.

I haven't bothered telling my parents about DS having HFA yet as they over-worry about everything. When he is around them he is very social so it's not an issue. However I have said it to some parents of children that he is friends with as I think it is more obvious when he is around is peers and I want them to be understanding of him being a little different - sometimes he overreacts and cries about something - I don't want them to think he's just spoilt or badly behaved

zzzzz · 13/09/2015 21:36

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LonnyVonnyWilsonFrickett · 13/09/2015 21:37

Rewrite your post with 'diabetes' or 'eczema' in place of 'autism'. Or even 'left handedness'. Would you think that reasonable?

Obviously you don't have to broadcast his dx to all and sundry, but it is part of him and nothing to be ashamed of. And really, what you are doing is denying your family the opportunity to understand your child better. To support him. To celebrate him.

Yes, you need to respect your Ds privacy. But thinking of his autism as a 'secret' to be kept isn't going to help him understand himself in the long term, IMO.

LonnyVonnyWilsonFrickett · 13/09/2015 21:38

X-post. Grin

Xena1985 · 13/09/2015 21:51

I kind of understand what u mean. It is very difficult and no need to tell the world at all. My health visitor literally told me just tell people if u need to.

@zzzzz not sure if you have a dc diagnosed but I am sure most humans on this earth are heartbroken when they received a diagnosis!

2boysnamedR · 13/09/2015 22:07

You don't need to tell anyone, my family have been told but won't accept it.

Wait till people ask, there's no right or wrong way to behave.

Definatly nothing to ashamed of ( which of course you haven't stated Grin ) my friend is from a tight community so I can imagine you don't want half the world knowing within 24 hours.

People close to you may notice one day ( or never - live IS blind!) they still may never ask, but know and never discus.

Or they may ask then not make it public. It's really needs to know.

Just take it as it comes. Tell dh how you feel, find out why he's anti and keep talking to him as one day, someone asks, what will you say?

zzzzz · 13/09/2015 22:21

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LonnyVonnyWilsonFrickett · 13/09/2015 22:49

Xena I was heartbroken when my DS received his diagnosis, but that was all me. All me. My mourning for the child I thought I would have, my upset for the plans I'd laid.

My dS was not heartbroken. He nodded, said 'ah, my brain has a name then' and got on with his day.

Jasonandyawegunorts · 14/09/2015 02:38

As an adult with autism you have typed a very upsetting OP...

Your son has a learning disability, it's not some dirty secret.

Our community is very tight and I know that people are narrow minded to be honest I was a had a stereotype of what autism was/is and I really can't deal with anyone's pity, I hate that feeling.

Oh poor you. well you should sit at home forever and never, ever challenge what people think about autism yourself, keep it a nice close knit secret because if it gets out it might soil your family name.

Youarentkiddingme · 14/09/2015 07:20

You don't say how old your DS is?

Autism tends to become more mark able in children as the social demands of the world outweigh their capabilities.

It's such a myth that autistic children aren't sociable and can't make and keep friends. By keeping this a secret your actually keeping this myth going. I'm not suggesting tatooing that his has asd on his forehead but there's no reason to keep it a secret. Personally what can people judge?

When people comment how well he's doing compared to back when you were worried could you not casually mention that you are working on specific skills since he was dx with asd and it's helping him loads - he just learns a different way and so you are approaching it a different way.

Original poster
sama190 · 14/09/2015 09:50

hello all, I did not mean to offend anyone but I will not apologise for how I feel..this is an open chat I can say what I want when I want and if anyone doesn't like it they don't need to read it...as simple as!

My son has just turned five he is in a mainstream setting and he is doing quite well. By heartbroken I mean they will worry about him a lot.

Thank you for your replies.

OP posts:
Jasonandyawegunorts · 14/09/2015 09:53

Bit hard not to read it when its in your title.

zzzzz · 14/09/2015 13:16

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mummytime · 14/09/2015 15:12

I think you and your DH need to go out and meet others with a similar diagnosis and get over it.

The diagnosis is important, as you son gets older it is likely that his "problems" will become more apparent at times. At 5 he may be able to mask it, or just not seem that "different" but by 10, 13, 17 it could become more apparent.

When exactly are you going to tell him?
Have you told his school? If not would you rather he was expelled for being "disruptive" (which my DD came close to) or them to know his diagnosis?
He will need help interpreting the world. And will need to be treated differently - he probably will not "get" subtle cues to how he should behave, and may well pick up the wrong ones from his peers.

My FIL has had to cope with both a grandchild and a great grandchild being diagnosed at pretty much the same time - he worries a bit, but I think our matter of fact attitude is reassuring.

ButterfliesnWaterfalls · 14/09/2015 19:48

I come from a similar background where mental health issues aren't talked about so openly. I had to explain to my parents and even my husband's parents what 'autism' is, and how it's going to affect DS. I told my siblings, and DH told his siblings.

I explained what it is, what it means for DS, how we should help him, etc etc. This way, they were able to understand why DS behaves the way he does sometimes.

It's really helpful to have emotional support from family. You obviously feel like you can't share it with anyone that's why you came on here. But I would advise you to share this with your family. Because it's nice to have someone to share your concerns/worries with.

Autism isn't something to be ashamed of. I have told DS's nursery, and although he isn't autistic, I explain to people that he 'thinks differently' to other children.

I hope that helps!

ButterfliesnWaterfalls · 14/09/2015 19:50

EDIT: although he IS autistic, I explain to people that he 'thinks differently' to other children.

Sammythemummy · 15/09/2015 19:24

I totally

Branleuse · 15/09/2015 19:33

autism is nothing to be ashamed of. You should be proud of him

Sammythemummy · 15/09/2015 19:46

Sorry I posted by accident Blush

You've had some harsh responses, although I can see it from their perspective.

I totally understand your dilemma, we also come from a close knit community and unfortunately people don't understand complex disorders or mental health so Ive yet to tell anyone bar a couple of my friends.

It's not out of shame and no, I also wouldn't tell other people of my child's medical conditions etc (although I don't think it's the same thing) unless I was leaving them unsupervised. I feel the worst thing about sharing an ASD diagnosis is the assumptions and limitations that will be placed on your child. Your child will automatically be treated differently and spoken to differently, you can tell them that they have average to above average intelligence but it will fall on deaf ears because in their understanding it's not possible to have a disability and still be intelligent/clever.

I think you should tell when you deem it necessary, he's still pretty young and you've not had long to come to grips with it yourself so I would put off for a while.

You're clearly supporting him as is school so I wouldn't worry about telling people now, enjoy him as he is :)

zzzzz · 15/09/2015 20:02

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Xena1985 · 15/09/2015 20:06

@zzzzz no one is 'othering' your opinion it's all in your head my love.
Go back to sleep zzzzzzzz

Sammythemummy · 15/09/2015 20:37

It's not based on an idea though

There IS more ignorance within certain communities due to lack of education, awareness and/or English.

And I don't think anyone has said their life is harder Confused

PolterGoose · 15/09/2015 20:46

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SadAndAngry87 · 15/09/2015 20:57

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