Autism secret... For how long?

[sama190]

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!

Grand parents maybe old and fragile anyway what the hell would u gain from telling them? What will they be able to do other than worry?!

Yeah, I've re-read this, it's certainly nothing near "Should i tell myu grand poarents..."

oh ffs. I give up.

I also wasn't heartbroken when I got DS diagnosis. I was relieved that he would now be protected by law and be able to have reasonable adjustments. Something that's been bendicial over and over.
Ds wasn't heartbroken - he diagnosed himself in the Camhs waiting room reading a notice board for children on autism

Telling relatives can be difficult. It took a while for me to understand my brothers attitude of "there's nothing wrong with him". But eventually I understand that he's just his nephew, he's who he is, nothing wrong - he's autistic. One of my brothers closest friends has AS.

I have not heard of anyone being refused a visa to the USA because of Autism.
I have heard of it for Canada, but I also know that even in the case of a family with a profoundly affected son - they were able to get a visa when they could prove in a court that their son would not be an undue burden to the state.

In several cases when I have been told that someones child has a diagnosis of ASD - I have been unsurprised and already suspected. But that is because I live somewhere where it is a common diagnosis, and everyone knows children with the diagnosis. But someone had to be the first to be open about it.

Now that may not be you yet.

I just find it upsetting that people in this day and age think it is somehow shameful and needs to be hidden away.

I would have been devastated had my parents decided to keep my disability a secret because other people wouldn't understand, or avoided any accommodations because I could cope without them - I coped even better with them.

You are clearly proud of him, but he is autistic, and if you hide that fact, you will be teaching him to be ashamed of it, that it is something that shouldn't be shared, that other people will treat him badly and that he should never ask for help in relation to his disability.

You don't have to announce it to the world, but you do need to talk about it positively and openly in front of him and other people, and challenge any negative attitudes you do come across. By doing that, you model to him how to think about his condition and how to respond to other people.

I have started to be more open about it but I do understand how you feel. I have also unfortunately recently started to realise how negative and actually plain nasty people are about autistic children. They are described as weird, badly behaved, out of control and in all cases their disability is seen as in some way additional to their 'bad behaviour' or poor upbringing'. This is by middle class professionals. it is completely depressing and I am pretty sickened by it. The overwhelming judgement seems to be that they would not be so bad if only their parents had disciplined them. Comments like 'they might be autistic, but they are also spoilt and badly behaved'. it is heart breaking really. I think when you tell someone about your child, you will really get to know what kind of person they are. people I had previously thought were nice have really disappointed me lately. it is one thing to admit you don't know much about a condition but this doesn't stop many from being judgemental arses.

When DS was dx with autism our consultant told us it was the least of his worries! So we have a lively one when it comes to disabilities.

Why hide it???? You and your son need support and your family can offer that. They will educated themselves or you can help educate then.
My son will never be a dirty little secret ... We are loud and proud and o wouldn't change anything about him!!!!