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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To not want to tell the other school mum's that DS has Aspergers

153 replies

thegirlinthebed · 08/06/2015 22:25

DS just turned 6.

He's been diagnosed with Aspergers.

I'm sure the parents of the other children in his class might guess he's a little different - but I'm afraid to say anything to them as I don't want to label him forever

He's almost 'normal' but can get very upset suddenly. Normally he gets over it pretty quick and gets on with things.

Sometimes I worry if I have to leave him at a party by himself in case he gets upset and I'm not there to calm him down quickly. I feel on edge until collection time.

If I tell people then everyone will know forever - and they'll always view him as someone with Aspergers. There's so much more to him

What would you honestly think if you heard someone in your child's class has Aspergers? Would you assume that child would find similar types of children to play with and wouldn't be joining in with your child?

If you don't know someone with aspergers / mild autism what would you assume my DS is like?

If you were me would you say nothing?

OP posts:
Vijac · 09/06/2015 16:15

I'm no expert but if he is getting on fine then I might be tempted not to label him. That said, he may well get more empathy if people do know esp if he's struggling socially.

fanjoforthemammaries7850 · 09/06/2015 16:29

It's not a "label".

We don't say "give a child a diabetes label" so we shouldn't refer to it as an Aspergers label either.

The whole idea of a label is pejorative.

fanjoforthemammaries7850 · 09/06/2015 16:31

I do notice that the word is only used by people who want to avoid disclosing the diagnosis anyway.

fanjoforthemammaries7850 · 09/06/2015 16:40

Words are important

LeChien · 09/06/2015 16:42

Completely agree Fanjo re. label.

Picking up on a previous point made, I believe I am on the autistic spectrum. Had this been known or acknowledged when I was younger, it probably would have made a positive difference to my life.
As it is I grew up with no friends and felt crap about myself.

I would be honest and open with your son in a positive way, and honest with parents if and when you need to. If your son then wants to tell his friends he can.

Andro · 09/06/2015 17:38

Words are important - I couldn't agree more fanjo!

My ds has a PTSD diagnosis, people being aware of it has been integral to him learning to manage it during treatment. Refusing to name a medical condition, especially when it has a direct impact on how a person lives their life, is unhelpful at best and potentially very dangerous at worst.

Branleuse · 09/06/2015 17:46

if your child was deaf, would you be worried about him being labelled deaf?

UmmErrWhateves · 09/06/2015 18:37

I know two young adults who were dx with aspergers as young children who keep quiet about their dx as do their families. They both had lots of therapy/support when they were kids and now come across as NT or almost NT. I guess they were taught to 'suppress' their aspergers. Confused I am NOT saying this is right (or wrong!) but it's what they have chosen.
Both sets of parents very much acknowledged the dx but didn't want to tell everyone. Although I don't know what their reasons for keeping quiet were. The boys both seem to be enjoying life at Uni and are both doing well with friends and studies. Both are a bit quirky I suppose but I can't think there is anything that would alert a casual acquaintance to think they have a DX of AS.

Everyone is so different. I don't think you can say what is right for one person is right for another.

BlackCake · 09/06/2015 18:50

My DS has Asperger's.

We told friends and anyone DS was going to come into contact with regularly as soon as he got his diagnosis at 5 yrs old. No big announcement, just as and when I got a chance to chat to people. Perhaps we were lucky, but we had nothing but understanding and interest in knowing more about AS from the vast majority of people (bar my wanker of a stepdad....but thats another story).

To be honest, being open about his diagnosis helped him (and me) pretty massively with socialising, as I could make decisions about how DS might cope and be open about them with other parents e.g. 'I'm not sure we'll make the picnic in the park tomorrow as not sure DS will cope', or 'I might hang about for a bit at the party just to make sure DS is managing OK' etc. So much better out than in and causing you to fret silently, honestly!

I can totally understand why you don't want your DS labelled, but in my experience it is far better he has an accurate 'label' that he can eventually understand and be proud of, than be labelled 'naughty' etc.

Do you have contact with any other parents of children on the spectrum locally? I found that a huge support in the early days.

Good luck x

TheMummalo · 09/06/2015 18:57

Hi OP I have Aspergers, I'm 46.

Guess what, I have NEUROLOGICAL difference which will NEVER go away.
Sods law my brain is wired differently to the 99%

The thing that has most hurt me (causing self loathing, anxiety and depression) is the firstly the lack of awareness, understanding and acceptance of people with the predominate neurotype.

Neurotypical adults (with no experience of autism) seem really unable or unwilling to make even an effort to understand us.

Ironically given your OP I think educating children about autism is the best way forward to achieve awareness, understanding and acceptance of autistic children and adults. :)

In my case I have talked to both my DD7 and DSD12 about accepting differences in people. I have also shown them media eg shown them a film about Temple Grandin/Let them read a books eg All cats have Aspergers.

Both of them have shown understanding, acceptance and kindness to children with differences....
DSD has a boy an Aspie boy in her class who she admires for his maths ability but is also protective of him.
DD has a friend with speech delay and learning disability who understands he used to get angry and lash out because he was frustrated. Shes always look out for him too.
*Both DD and DSD are neurotypical.

In short OP I think promoting AS awareness with children is the way forward!

Instead of hiding his difference fight to have his peers accept him and others like him!

PolterGoose · 09/06/2015 21:52

This reply has been deleted

Message withdrawn at poster's request.

AcademicOwl · 10/06/2015 07:22

mummalo you said "fight to have his peers accept him and others like him".

I think it's the "fight" bit that's difficult, tbh. Everything is enough of a fight, without adding in dealing with other people's prejudices. For me it's also really hard when it's aimed at my DS, who is very young and doesn't really understand. (& that's ok; he doesn't have a diagnosis at the mo - and other than understanding kindness towards everyone he doesn't need to have a literal explanation of neurotypical, etc, etc).

It's not about 'labels' per se- it's about how best to support a small child and try to ensure they aren't alienated where they don't need to be. I find it upsetting that some parents seem to view my DS through the prism of his potential diagnosis rather than just as DS.

ragged · 10/06/2015 08:22

What would you honestly think if you heard someone in your child's class has Aspergers?

That it would be interesting to see if I could even tell anything special about them.

If you don't know someone with aspergers / mild autism what would you assume my DS is like?

I would assume that he doesn't like changes & fusses about things that other people take in stride.

DS is exactly like that and he doesn't have ASD!! So I guess to me they're both on a spectrum of normal, maybe at the fringe end.

zzzzz · 10/06/2015 08:28

This reply has been deleted

Message withdrawn at poster's request.

fanjoforthemammaries7850 · 10/06/2015 08:46

ASD is far more than not liking change and "fussing over things' more than other people.

Dawndonnaagain · 10/06/2015 08:50

My 20 year old ds at uni has a little more than 'mild autism' and does not 'fuss over things'. His tics are full body tics and he sometimes needs stitches. His 'fussing over essay deadlines' actually requires medication now and then to enable him to a)cope and b)sleep. In his third year he will still need an escort, texts to remind him to eat and drink, a mentor.
On the positive side, there is every possibility he will get a first. He has been offered a place for his masters already and he has made friends.

zzzzz · 10/06/2015 09:38

This reply has been deleted

Message withdrawn at poster's request.

SquigglyLine · 10/06/2015 10:13

If I heard that a DC in my DC's class had ASD, I would assume that they needed particular routines/structures/familiar food etc. and I would ask the other mum about that when s/he came over to play, so I could accommodate it.

I know there's a lot more to it than that, but that's where I'd start.

Yokohamajojo · 10/06/2015 10:25

My son in Y3 has got a boy in his class with SEN but the mum has never told anyone what, he has got a teaching assistant. It's of course totally up to you but I find it a bit difficult to answer my sons questions about this boy. They are all fine with him and very protective of him. He is very sweet but can have some outbursts. But I just don't know what to say, I have just said that his brain is wired slightly different and see things differently. Thisa may be totally wrong but I just don't know. So for that reason it can be good to tell.

zzzzz · 10/06/2015 10:36

This reply has been deleted

Message withdrawn at poster's request.

Goldmandra · 10/06/2015 10:39

I remember wanting it to be a secret at first. I didn't know much about Asperger's myself and I was coming to terms with the fact that the difficulties my DD1 was having weren't temporary.

There is a grieving process involved in your child being diagnosed with a neurodevelopmental disorder and I think wanting to keep the information to yourself is part of that process. I couldn't actually say the word Autism for about six months, not even to myself.

Five years down the line, I have two DDs with a diagnosis, both of whom feel positive about sharing the information and neither of whom has been treated negatively as a result of someone knowing.

The biggest issue I've come across is well meaning people taking me to one side and letting me know that they know something about ASD and my DDs don't have it.

Take your time. Getting your head around this diagnosis could take months or even a year or so but it will happen and it will feel right and normal again. You can share the information when you feel more resilient and it feels right to do so.There is no hurry.

If, in the meantime, you feel the need to let someone know that your DS might struggle at a party or play date, just say that he struggles with loud noises, getting changed, people invading his body space, etc. You don't have to give it a name.

Dawndonnaagain · 10/06/2015 10:47

The biggest issue I've come across is well meaning people taking me to one side and letting me know that they know something about ASD and my DDs don't have it.
Oh god, yes. I have three children on the spectrum and the times this has happened!

Minifingers9 · 10/06/2015 10:48

"The biggest issue I've come across is well meaning people taking me to one side and letting me know that they know something about ASD and my DDs don't have it".

I have a SIL who, every time I mention something connected with ASD (obsessive traits, tics etc), feels the need to reassure me that her NT dc's do it too.....

Yokohamajojo · 10/06/2015 10:51

zzzzzzz thanks for your reply, I wasn't after an exact diagnosis! The questions were like why is XX repeating stuff, why is XX not doing this or that? Why is he obsessed with the colour red? This was more in Y1 or 2 and now my son just accepts that he is a bit different. For me though that was my first encounter with autism so wasn't at all sure on how to respond since I didn't know if he actually was autistic or something else. What I meant was that it would be useful to have had a bit of general knowledge (which I believe I have now) Perhaps the school could have some guidelines on what sort of questions may come up with regards to children who are different without specifying a specific child?

UmmErrWhateves · 10/06/2015 11:09

I don't think you need to know someone's dx to be understanding towards them.