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To be completely open with everyone about DS having autism?

(40 Posts)
Imaginosity Wed 19-Apr-17 23:09:23

I've also posted this on the SN boards but want to post here too to hear other point of views.

I've been reluctant to tell too many people about DS having ASD - as I always have this fear that when he's a teenager he'll be annoyed at me if he's bullied about it. I'm sure when he's a teenager everyone will see he is different anyway and might guess he has autism.

I've told people I'm close too and that know DS. It takes the pressure off when DS is around them as they cut him some slack in relation to his behaviour.

I would love just to be able to be open about it with everyone as he does act differently to the other boys in his class and I hate wondering are they thinking he's odd rude or badly behaved at times
He wanders off, sometimes doesn't notice people are talking to him, sometimes he's too boistourous, sometimes he spontaneously does something that's not very nice without thinking - like pushing over something someone is making.

I'm also concerned as some people have preconceived ideas about people with autism and I don't like people assuming he's a certain way.

In an ideal world I would love it to just be a part of DS that doesn't need to be kept secret as if it's shameful or something.

Am I over worrying about this? My main concern is DS not wanting everyone knowing the specific diagnosis as he gets older.

ZackyVengeance Wed 19-Apr-17 23:15:32

I dont live in your world(cp here). what I have found with my nt son though is sometimes knowing his mate had ASD helps
one of his best mates does. and once he knew he got him. years later they are still best mates.
what I have found is the young people are a lot more understanding of sn

Daydream007 Wed 19-Apr-17 23:28:23

Surely it's better for your son that people know so that they can understand what he is going through and why he behaves differently.

DrowningSeas Wed 19-Apr-17 23:33:46

Absolutely, the more people are open and talk about ASD and the other varieties of child mental health and behavioural gifts the sooner the stigma begins to fall.

Too many are still afraid to let their beautiful gifts be a part of society for fear of apologising for behaviours they have no control of.

Let your boy enjoy his time, don't apologise for him (unless necessary) but be open about his struggles as this will help others who don't understand to understand

TheRealPooTroll Wed 19-Apr-17 23:37:31

I would tell who you need to but I would be wary of telling everyone. You don't know what your son will be like when he's a teen and if he will want everyone to know his private medical information. If he does then that's his choice but if his whole class knows for eg then he might not have that choice.
For every person who will be understanding about his diagnosis there are others who will avoid him or make unfair assumptions about him before they have got to know him.
It would be great if those things didn't happen and people could be open though.

Muddlingalongalone Wed 19-Apr-17 23:46:47

I don't know about autism but I'm very open about dd's hearing loss. Obviously they can see her hearing aids if she's with me & they are not covered by hair/hat but generally I think that the more people are aware of disability & the forms it takes & the implications on behaviour or in dd's case speaking to unfamiliar people the better. I hope it will promote wider acceptance, tolerance & understanding. I might be naive & idealistic and teenagers are a mystery to me as mine are both still small but I hope I'm doing the right thing.

Raredays Wed 19-Apr-17 23:54:49

I'm very open about DDs SEN. I find it helps everyone. DD, myself and the company we are in.

EineKleine Wed 19-Apr-17 23:59:16

We are debating this ourselves. DS is on the autism assessment pathway, so he may or may not end up with a diagnosis. As you say, our main concern is that DS himself may choose not to share that info when he is older, for whatever reason he chooses, and telling people deprives him of that choice. I am hopeful that if he does get a diagnosis, he will be able to "own" it and not see it as something to hide, but we would need to have a good reason to take that choice away from him. I'm not sure if we have a compelling enough reason to do so.

It seems to me that there are various layers. Teachers at school and club leaders, I think, should know, for all the reasons we think it would be helpful to get him diagnosed. But what about parents of friends? On one hand it's none of their business, but if DS goes round to play and they are in charge of him, then arguably it becomes their business so we can explain what approaches work and which don't. And then if some children's parents know, some children and other parents will find out...

My view has altered a great deal over the last year as we have struggled more day to day. Also, separately we've been aware of our eldest preparing for secondary school, with all the autonomy and increased need for privacy that comes at that age. I think you'll get loads of people saying of course you should tell, whyever not, and I'd have said that myself a year ago. But from where we are now, it's not so straightforward. <removes splinters from arse>

Teabagtits Thu 20-Apr-17 03:02:04

Tell those who need to know or if the situation arises where it may be beneficial. I'm autistic and I'm quite open about it but don't tend to tell people as I meet them and only a handful of friends/acquaintances know but only if it comes up in conversation. That's not about shame or stigma just that it's not always relevant. I find so few people understand autism(everyone is aware of it) that it doesn't really add to the conversation or relationship unless it's relevant. When your son is old enough to decide for himself then he can tell people or permit (for want of a better word) you to tell people. Does that make sense?

FreddoFrog Thu 20-Apr-17 03:58:49

We are in the same boat. DS (7) was diagnosed in February. He also has ADHD (diagnosed at 5). We haven't told him about either label and don't intend to for now. We haven't told anyone other than Teachers, my mum, our very best friends (who live in another country anyway).

As others have said, very few seem to 'get' autism even though they think they do (& ADHD for that matter <sigh>). And it of course presents so differently in everyone who has autism. I do find it helpful to outline to some people (the coaches on a recent sport camp for example), what DS has trouble with and what they could do to make things go smoothly.

I figure when he's a teenager and becomes more aware of things (why he sees a child psychiatrist, why he takes daily medication), then we'll talk about it. It's his private medical history and it's up to him who he disseminates that information to. While he's still young, I think we can continue to manage things for now. I have found with his ADHD diagnosis that I have regretted telling a few people ('friends'), either because they just didn't get it/they have subsequently kept their kids away/they tend to blame my child for everything because of his ADHD/they have told other people without checking with me.

I agree with earlier comments that young people are more aware of SEN and more accepting of differences. But their parents often aren't and we live in a small community, so for now I'm keeping DS' diagnosis to myself.

Sorry for my ramble, I've had too much coffee and am all over the place today!

Just want to add - I have been very open about DS' diagnosis with my SN parent friends and they have been a lifeline. To find people that just 'get' it, is so fortunate and helpful.

FreddoFrog Thu 20-Apr-17 04:03:16

Yes to what TheRealPooTroll has written above. Especially re the assumptions people will make about your son if they hear the diagnosis first before they get to know him. I wish that weren't the case and hopefully one day there will be better understanding of autism, but I think this is good advice for things how they currently are.

CleverNever Thu 20-Apr-17 04:41:09

My ds (6 years old) has ASD (he's in mainstream school without am aide, has a fairly aspie presentation) and we tend to tell people if it's relevant. For example, if someone mentions their child is seeing an OT (live abroad and here kids seem to see private OTs etc much more than in the UK for help with fine motor skills and so on) I'll often say that ds does too and go on, if I feel comfortable, to say why. In a couple of instances people were very surprised and said they 'couldn't see it' or went on a little rant about 'labelling children' (only people who themselves view it as a 'label' to be avoided make these type of comments ime). But as he's getting older I think I'll leave it up to him. We tend to come at it from a neurodiversity standpoint and believe that by being open we're helping to increase acceptance (not just awareness) BUT I know ds may have different feelings as he gets older so am tending to mention it less than I did a few years ago.

Spikeyball Thu 20-Apr-17 06:21:15

Ds has autism and we are open about it but ds's differences are very obvious. We always tell people if we think it will help him but we don't do this is spikeyboy and he has autism..... for the sake of saying it if you see what I mean.

LouKout Thu 20-Apr-17 06:27:21

This thread is quite sad.

If everyone goes round not disclosing the diagnosis nothing will chsnge in terms of preconceptions and awareness sad

Sirzy Thu 20-Apr-17 06:40:26

Personally I don't see what is to be gained from hiding it, other than to tell the young person that it is something to be ashamed of.

Ds has severe asthma. He also has autism and other related issues. I am as open with him and others about discussing both and although I don't go shouting it from the rooftops I certainly don't keep either quiet or a secret.

TheRealPooTroll Thu 20-Apr-17 16:00:30

It's not about being ashamed. It's about other people being arseholes. Kids don't generally have the piss taken out of them for having asthma, or get told people like them shouldn't be allowed in certain places, or are assumed violent or in the wrong with no evidence.

Sirzy Thu 20-Apr-17 16:02:00

But if it's kept hidden how will that challenge perceptions?

and children do get bullied for having asthma

WhooooAmI24601 Thu 20-Apr-17 16:07:36

DS1 has ASD. He asked last year what it means and we told him the truth. He has some close friends whose parents are friends of ours, so they know that he can be quirky and accept him for exactly how he is. It's not something I or DS1 would advertise to everyone in the street but it's something we would share if we needed to. It's like having migraines or asthma; sometimes people need to know.

I don't advertise his ASD on social media; I have a friend who defines herself as an "autism mom" which makes my backside clench for so many different reasons. She often posts openly about how awful life with her DS can be (his behaviour is much more challenging than DS1's) and people pat her on the back and praise her parenting as though saying awful stuff on social media makes her an example of spectacular parenting as she posts things which I suspect will bite her on the arse in years to come.

DS1's Autism isn't who he is; it's simply a part of him like blonde hair or blue eyes or massive feet or a gorgeous smile. It's nothing to be ashamed of but also nothing to shout about.

TheRealPooTroll Thu 20-Apr-17 16:11:12

Well if you want to subject your child to prejudice in the name of a goal of us all living happily in harmony then that's up to you but I'm going to let mine decide for himself when he's old enough.

TheRealPooTroll Thu 20-Apr-17 16:17:42

I also know a few parents like that WhooooAmI24601 and it's not the parents information to share. Some diagnosed adults choose not to share their diagnosis and parents who share it (beyond what is necessary and confidential) are taking that choice away from their child imo.

Sirzy Thu 20-Apr-17 16:20:59

Given it is generally behaviours that are judged not the actual diagnosis I am not sure keeping it hidden is going to do any favours anyway.

whooo spot on IMO

WhooooAmI24601 Thu 20-Apr-17 16:21:00

You've worded it perfectly Poo. I feel similarly that DS1's diagnosis belongs to him, not to me. If I do share it with others, DS1 and I talk it through too so that he's aware that I've shared it.

wizzywig Thu 20-Apr-17 16:22:14

You never know, some people may have guessed and havent asked you

TheRealPooTroll Thu 20-Apr-17 16:28:16

I disagree Sirzy. I have a friend who was subject to a petition to have her son removed from an extra curricular club after the leader accidentally made another parent aware of his diagnosis. He had had no issues with the other children at the club. He was also blamed for an incident at the school he had just started which they only accepted he had no part in as they checked records and he was absent that day. People have preconceived ideas about what children with asd are like and then they see what fits with them. I don't blame adults who don't want to reveal their diagnosis to all and sundry.

OhSoggyBiscuit Thu 20-Apr-17 16:36:44

I only disclose my diagnosis if the subject of autism comes up in conversation- we might be talking about it and I say "oh yeah I have that, I'm high functioning and here's my experiences with it relating to the conversation" or if I'm really struggling to cope with a situation- extremely loud or crowded places and that information is useful for someone to know to understand why I'm acting the way I am.

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