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!

If your in a community where everyone is "your aunt" ( your mums, aunts, husbands sil) and she knows your business and comes round your house every time she's passes as do most of your extended family who are all passing on information Chinese whisper style then I can imagine you might want to think about telling people. ( just referring to my experiences growing up with friends)

Life with SN isn't half as hard as all the extra crap that comes with it.

Personally I could quite happily stick my fingers up at the world and lock my door. Wouldn't it all nice if everyone just "got it?" But very few people do unfortunately. Ignorance spans continents, race, religion, sex and class.

It's hobby to be enjoyed by all humanity regardless

You tell people as soon as it would be beneficial to your son (and to a lesser extent yourself).

As he gets older it is most likely he will need the support and understanding of those around him to make adjustments for his difficulties to avoid the mental health problems of anxiety and depression that unfortunately so many people with AS/HFA get in the effort to conform with an NT world.

I sincerely hope your ds continues to thrive and be happy but I am also convinced that the best way to ensure this is to celebrate who he is rather than masking his difficulties. I suspect your son is thriving at the moment because you are making adjustments, probably not even always consciously, with the knowledge you have gained from going through the assessment process. I think it is only fair that you pass this knowledge on to anyone who has close contact with him.

And to be honest there is something to be said for doing it now when his ASD is not causing him major problems rather than waiting until a time when it does.

It was a no-brainer for us because we didn't investigate a diagnosis until behavioural problems started to occur and at that point in time there was no way I was going to make things more difficult for my ds's (or me) because it might make relations a bit sad or a bit worried.

OP do what makes you happy

We are in similar position, have told teachers only. If people close to us proved to be less judgemental id tell them, but sadly that's not the case

All the best for your little boy and you my love xx

sama190 you must do what is right for your family. Although we were devastated when we received a diagnosis of asd for our sons, DH and I were also hugely relieved as it meant that our parental instincts were correct and now we could formulate a plan to get our sons the best support.

I had similar worries to you about my parents as they are elderly and in very poor health. DH's mum is also in poor health but they are both younger than my parents. I felt they all needed to know but I had many sleepless nights over it and cried so, so many times. I told my parents and they have been so amazing and incredibly stoic. Shortly afterwards my father had a serious health setback and I actually thought the news might have contributed and would surely kill him. It didn't of course but I couldn't control my emotional response to it.

DH's parents on the other hand have not taken it well at all. I think it has had a devastating impact on his mother. I can't say much more here but it is an extremely worrying situation.

Our siblings know and one of my sisters in particular has been great. I'm so lucky to have her in their lives.

Our friends don't know. They are aware that the boys have a severe speech disorder but that's it.

I agree you have had some harsh responses here but please know that you can come here and ask for advice. I know when my own two sons were diagnosed with asd in March I would not have coped without the help of others on this board. I don't always cope very well now but I'm getting there.

Good luck to you.

Hello all, thank you so so much for all your replies. I am not offended at all by any of the responses I came here for advise and definitely consider others view points and respect them. I wouldn't have posted otherwise.

If only we did live in a rosy life where people accepted and did treat people with special needs the same as neuro-typicals. I find it hard if not impossible to change the whole view points of others in regards to special needs, different people think differently. If you haven't done your research about autism you would not understand it is a spectrum condition and people are affected to varying degrees. Bloody hell my younger son was being vaccinated last week and I took my older son with me, when I told the nurse he has autism, she said 'oh my god he looks so normal'! As if autism has a 'look'. She then said 'does that mean he's hyperactive?' I felt like saying yeh he's constantly jumping off the walls'!! What the hell!

I have read countless blogs about parents who have been refused work visas etc to the states after handing in paperwork about their children's special needs. And other such stories, so I really think that when you have a special needs child you are treated differently because of people's stereotypes.

My sons school when I told them he has been diagnosed they straight away said he would have to be staggered in slowly to school. Though I very well know he transitions extremely well, he was at a summer camp and even at nursery he transitioned well. Ok maybe we could argue that school were trying to accommodate him and help, but I know he transitions well and he they have cancelled the staggered entry after seeing how he was for a few days. The head literally told me we do what's best for the child not for their parents. You don't know my son and I was proven right anyway..

Finally in regards to being proud of my son I am incredibly proud he has made such great progress in such a short period of time and amazes us with things he comes out with every day...

I just find it difficult to change all of societies minds on such matters.

But that's the same thing. Visas are refused because of financial reasons which adds to the point that people who have children with autism etc ARE treated differently for whatever reasons and whatever prejudices! That is a stereotype in itself.

OP nurse massive idiot, she's lucky you didn't go ballistic !
FWIW it does sound like you're extremely proud of him, he's soooo lucky to have you, you ll both do great!!!

Oh sama. I do feel for you, I do, but the way to change people's minds about SN stereotypes is not to pretend your DC's fit into an NT stereotype.

The risk you run is that your DS becomes yet another stereotype - the weird boy, the naughty boy, the boy who never listens, the boy we don't want to play with, the out of control boy, the boy who should be excluded... All things that have been said about my DS or other DCs with ASD because they either weren't diagnosed, weren't supported or weren't fitting in.

However. It is of course your family dynamic to manage. Genuinely, good luck.

sama having adjustments made for your child in order to give him the same chance as other children isn't stereotyping, It's legally putting him on equal ground to those around him in order to give him the same chance.

Yes but that means them and their families are not given equal opportunities, like others are! For whatever reasons

There are some harsh comments on this thread.

Sammythemummy is right, there are indeed more ignorance within certain communities etc etc etc and I know exactly where 2boysnamedr is coming from, as our community is very much like that.

Just because you don't want to share a diagnosis with someone, doesn't mean that person is ashamed .

Sama only tell the people who REALLY need to know your DS diagnosis eg. Teachers, people who are looking after your son, doctors etc. I definitely think you should tell your very CLOSE family and friends.

Just because you don't want to share a diagnosis with someone

That's not the same as keeping it secret from everyone though is it?

There is no reason to tell everyone, but at the same time the op has said she has Kept it secret from the people who have daily contact with her DS, becuase they are at risk of showing pity.

Exactly that not sharing a diagnosis doesn't mean ur ashamed!!
Like I said too my autism specialist health visitor just said tell people if u have to!! People like school etc should be informed!

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?!

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! why tell old people anything, They'd probably forget or get confused!

oh wait... no... being ageist isn't good.

They would be able to support and understand their grandchild for a start.

You're suggesting that posters are being ageist for wondering whether or not to tell their parents/grand parents? Really?

Not ALL grand parents are in a position to support or understand their grandchild - their own mental health issues, financial issues, indifference, distance, language barrier, cultural, religious differences - whatever reason.

My sons are severely autistic, I couldn't hide that fact even if I wanted to but I am still dealing with the fallout of my PIL knowing about their diagnosis.

I'm very upset to read some of the comments here.

You're suggesting that posters are being ageist for wondering whether or not to tell their parents/grand parents? Really?

The poster wasn't "Wondering" anything, she was stating that it's usless to tell old grandparents becuase they are fragile.

I'm very upset to read some of the comments here.

The OP has made it clear it's an open forum and if you don't like the thread don't read it.
Not my words, not what i would say, but applies to everyone.