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To tell people that my DS has Autism?

(21 Posts)
WinterKisses Wed 12-Nov-14 21:25:16

DS (3) is Autistic, I wasn't shocked to find out but it was quite a lot to take having a diagnosis if you see what I mean.

I've told a few people who were not surprised either as most people were expecting it.

My DF has been really strange since I told him and it's making me feel as though I am doing wrong by telling people about DS. He said 'I'm not going to tell anyone as I don't want him labeled, I don't want anyone to treat him differently and I don't see why anyone should know'.

I however feel as though I want to talk about it, I don't have any support at home so it is nice to be able to discuss these things with someone. I don't want DS growing up thinking that I am trying to hide his Autism from others as it may seem as though I am ashamed of it which I most certainly am not. He has a younger brother and I also want to be open about his Autism with him so we can help DS cope with things easier and I want him to understand that even though he does have Autism and will find things difficult sometimes it is a part of him and we will help him when he needs it. DS does struggle to socialise and it may come across as rude so I think that letting people know that he has Autism so his way of coping in large groups is to shy away but he will come round when he is more comfortable would also help people understand him better.

He is perfect, I wouldn't change him for the world but my DF has made me feel as though I am doing something wrong by him for being open about it.

AIBU? It is a fairly new diagnosis for me and I'm still learning about it but my DF has made me doubt myself as a parent.

fasterkillpussycat Wed 12-Nov-14 21:28:39

I don't think you are BU. My child was diagnosed with a genetic condition shortly after birth and I found that I frequently wanted to tell people about it. I found that it helped me deal with it. As time has passed, the urge to discuss it has passed. However, it helped me at the time.

Pagwatch Wed 12-Nov-14 21:29:55

You might want to go and post on the special needs chat section.
I think we all cope with diagnosis in different ways.
My DH was the same as yours and he explained it rationally but it was denial. It was just denial.
He didn't want to tell people and he didn't want to label DS because he was not coping.

Don't doubt yourself and don't hide his diagnosis. It's nothing to be ashamed of.

DoJo Wed 12-Nov-14 22:37:12

If telling people will help you and/or him to get the support you need and the understanding that will make your lives easier, then fill your boots! I can't see how 'labelling' him will make things worse, if anything surely people will be more accepting of any behaviour that stems from his autism rather than thinking he's being naughty, rude or calling your parenting into question at a time when you really need to feel confident about what you are doing.

I know that the situations are completely different, but there never seems to be this angst over telling people about something like a nut allergy or asthma. People do it so that others can make reasonable adjustments to accommodate those who might be affected rather than carrying on regardless, so why should autism be any different? And you never know who might have a tip or coping strategy that could really help you and make your lives easier - anything that makes people more able to help is surely a good thing...

Balaboosta Wed 12-Nov-14 22:56:28

Good luck with this. Remember this is a new situation and it will unfold. You don't have to make any hard-and-fast rules now. Tell who you want to tell; don't tell who you don't want to tell. Your DF will catch on. Give him time to get used to the idea. And congratulations on achieving a diagnosis so that you can help your beautiful boy.

lougle Wed 12-Nov-14 23:29:29

At the moment, tell. Later you may need to reassess. DD1 has always known she has a 'poorly brain' (not ASD, btw) and we've been very open, but last week I heard her introduce herself to some girls and she said "I'm x.....I have a poorly brain".

I talked to her afterwards and said it is her business and she doesn't have to tell everybody she meets.

She's nearly 9 now and I think that although she's mentally much younger, we have to bear in mind her right to privacy and respect. It's stopped being our news now. It's hers, if that makes sense.

WinterKisses Wed 12-Nov-14 23:39:16

Thank you for your kind replies.

It's all so new to me and I just want to do what is best for my DS, he is perfect to me and I don't want him to think otherwise so that's why I thought that me being open about him being Autistic would help him understand that it is a part of him but it isn't anything to be ashamed of, I'm sure that I will learn things along the way. I haven't got a lot of knowledge about it at the moment and I want to do everything I can to help him whether that means reading books or going to groups I will have to see.

Lougle thank you for sharing that, it has given me another perspective on things and I hadn't thought about how I could affect my DS in that way.

Smukogrig Wed 12-Nov-14 23:48:21

My son is older than yours and at first I needed to tell everybody, because it was hard to 'contain' anything. But as the years roll by I realise that the decisions I make effect him too. It's not about me. It'll be about him too, and who've I told and not only who I've told or what I've told them but how they perceive the 'issue' and what they make of it. So, if that sounds like a vague answer I apologise. Perhaps just rein it back in a tiny bit. Tell people on a need to know basis. That's different from keeping a secret. You don't owe everybody you meet your family's medical health etc

ImTheOneThatKnocks Thu 13-Nov-14 00:07:21

YANBU - I think it's ok to do what you want. smile. Maybe your DF just needs a bit of time to get used to it.

Sometimes I think if you are talking about older children with very functioning autism or aspergers that it may not be appropriate to talk about it to too many people. Some children may want to keep the information private and I think thats perfectly ok as long as it doesn't hinder them in any way. Ultimately it is their business.

There was a thread on MN where a high functioning and intelligent young adult lost his job when his employers discovered that he was had aspergers. The employers contrived a reason to fire him but it was thought that the real reason was his aspergers. (I can't remember the details 100% but that was the general gist of it). These days if you put information 'out there' (Facebook etc) then you have to assume it's public knowledge for ever more. So if you are making a decision to make information public you have to be confident that it's going to be in the child's interests when he is an adult too.

Keeping information private does not automatically equate to being embarrassed about it. Iyswim

(Sorry if I've not used the correct terminology)

I hope everything goes well for you and your son thanks

ProudAS Thu 13-Nov-14 06:30:02

I grew up with undiagnosed autism and got some far worse labels (which was just the start of it) because people didn't know what was going on.

It is part of who he is but not everything about him. People need to know and labelling needs to be challenged.

lougle Thu 13-Nov-14 06:35:14

Tbh it's a fine line between 'being comfortable in your skin' and 'feeling that you have to tell people.'

For DD1, the need to tell arose from the fact that she was so young that it seemed as if she was being naughty all the time. I used to drop in to conversation her SN so that it headed off disapproval.

I found that by 6 years old, I suddenly stopped needing to say that DD1 has SN because it was so obvious (she's quite able but delayed in all areas) because her speech is unclear, her walk is a bit odd, her behaviour/development trails at about half her age, etc. I still tended to say because it wasn't anything to be ashamed of.

It's only now that I'm starting to look ahead to her teen years and adulthood (only 9 years away) and I'm thinking in terms of life skills. DD1 is inherently too trusting of strangers. It won't help to add into that an over disclosure of personal information, so we need to start helping her judge 'who needs to know what'. That's tricky to do if we tell anyone we meet her medical history!

Sunna Thu 13-Nov-14 06:38:09

My niece is autistic. When she was diagnosed her paternal grandmother's first reaction was, "Well, it didn't come from our side of the family."

I think grandparents struggle with the possibility that it could somehow be their "fault". They are of a generation who believe a lot of illnesses and conditions are somehow inherited.

She came to terms with it eventually but didn't talk about it to anyone outside the family.

Quitelikely Thu 13-Nov-14 06:50:39

I think you need to let him come to terms with it. He just doesn't know how to handle it yet. Then discuss the subject again

500smiles Thu 13-Nov-14 06:58:19

If you're lacking in support then the SN section of MN is pretty bloody fabulous.

I told people initially and then as DS grew older I became aware that he deserved privacy and dignity and it was his choice to tell people or not.

Obviously for important things medical, education etc then it's openly disclosed.

blackeyedsusie Thu 13-Nov-14 07:24:05

autism is a protected disability so telling people is useful sometimes... likein the library when you are reaplacing the books back on the shelf and trying to prevent an iminent meltdown... (he would have been chucked out by now if not)

HominyTreasures Thu 13-Nov-14 07:47:33

checks namechange

I agree in theory autism is nothing to be ashamed of and just a normal variance of human experience etc etc, but I have to say my life got a million times better when I went undercover. With the caveat that I am relatively high functioning, and went to mainstream primary and special secondary (Though as many-- have no qualifications and did not have a job interview til over 30 years old and wow, did I melt down in adolescence? Yes. Yes I did.)

Some things that got better:

1. Pain relief at the doctors/dentist, which is just amazing! They started listening when I said something hurt and not just dismissing it as my "anxiety" or "sensitivity" and now I can get a root canal without being in agony. Worth it for that, tbh.

2. Work and professional opportunities. Whereas before anything I said was always dealt with in terms of "my issues", now at work I can constructively and positively solve problems for everyone. In fact now that is basically my main skill and I have refs and testimonials all speaking to my "strong and clear insight" and the excellence of my "structural and systematic analyses". And I can make everyone money, which people rather like, and was all I saying before but, eh.

3. Social success. I junked nearly all my childhood connections and found that, without people "making allowances" and "tolerating" my SN, plenty of people found me interesting and even exciting to know. I have bust ups now and again and I do hurt people's feelings in mysterious (to me) ways now again, but actually the thing is that I am not an arsehole or abusive and lots of people are quite weird and still manage to have friends and get on in their lives. It's also actually ok to not explain. It's ok to just say "I'm busy that night" when someone invites me to a restaurant with bad lights or noise. It's ok to say "No, I don't do parties, but let me take you out for lunch next week".

There are so many other things, but those are three I can think of straight off. What I'm saying is, it's admirable to want to fight the system and shake up society and all that. I did that for 30 years. but it's a big choice to make for another person, if there's a choice. There isn't always a choice, of course.

I moved away from my (lovely and loving) family in the end, so committed they all were to my identity as an autistic person it was impossible for me to be a person. Everyone was so busy "understanding" me and "accepting" me that there was simply no way to be respected or admired or any of the other complex factors of self-conception.

LL12 Thu 13-Nov-14 08:00:48

I am more than happy to tell people about my child's Autism if they are interested.
I also think the more people know about it the better it is for the children with it as there are so many misconceptions surrounding Autism.
Eg: Some people think my daughter can't have autism because as they say "But she isn't violent", this is one of the main problems I face as many seem to think that all children with Autism are violent and hurt others when many are very gentle souls that have never hurt a fly.

I think the more you speak about it the better so that people understand that they are all different on the spectrum and what one child might do another won't.

SheffieldWondered Thu 13-Nov-14 08:37:19

Great post HominyTreasures - it's good to hear that things are working out well for you.

Flappingandflying Thu 13-Nov-14 09:15:56

Oooo Hominy. Like your take on life. That's just how I feel about Flyingboy. It really really used to (still does) piss me off when people use the 'kind, special voice' and essentially patronise him because of his autism. He's a person, who, like you, has fab insight into things and does not want to be defined by his disability. There's a local group to us for adults with Aspergers which I have mentioned to him and I know one of the guys who goes but Flyingboy doesn't want to. Neither does he want to go to any of the groups (all miles away as well) suggested by Social Services and I get that.

Op I think you are handling it all well but I wouldn't necessarily tell the world unless there is a good reason. The older generation still have their view of autism coloured by Rainman and that BBC programme on the Savants. I always get comments about brilliant artists and mathemeticians. Give grandparents time. At least they know and you know so that might stop the comments of 'he watches too much TV, you are too hard/too soft on him....'

OneInEight Thu 13-Nov-14 09:56:14

The ds's AS restricts and affects enormously what dh and I do and our interactions with family and friends so, yes, I am very open about their difficulties and the reason why. We spend our life trying to meet their needs and sometimes I think you have to think of yourself for sanity.

In the past, for example, I have had to repeatedly cancel meeting up with friends because one or other of the boys is having problems and because I want the friendship to continue I want to tell them the real reason why. Likewise, with relations at the moment ds2 finds it very difficult to cope with large family occasions so again I want to be able to explain this so that we can work out a way to deal with it which means we don't stop contact completely.

It is also selfish but I would rather people know the challenging behaviour is due in part to their AS rather than us just being "crap" parents.

But mainly I tell people for their benefit. They are at the stage now where small adaptions e.g. giving one step instructions or avoiding competition can make a huge difference in their ability to cope in the real world. We usually phrase it as "ds has AS and this means.....". ds luckily comprehends that telling people like this helps him and agrees that we can.
In the past ds1 has been banned from activities because of behaviour but since we have started doing this he copes much better because the adults in the group know that they need to intervene quickly when things start to go wrong. As he gets older and, hopefully, more independent then it will be up to him but at the moment I think there is more benefit by telling than not telling people.

I do hope they get to a place like Hominy where they can cope without us having to explain their differences but I do think if they are to be able to have independent lives in the future we need to be able to tell people now...

LarrytheCucumber Thu 13-Nov-14 10:14:59

My DM was very upset when DS2 was diagnosed with Asperger's. It was difficult for her to accept that her youngest grandchild, who she had idolised, had a problem. Even now she is always full of how wonderful he is, and we don't tell her about the difficult times because coping with her reactions just makes another problem for us.
Your DF needs time to process it all. Depending on his age, he may never have come across autism before or only have a vague idea about it.
Are there any support groups near you? Many people find it helpful to get together with other parents and talk through what is happening with their child.
Apart from that we told people on a need-to-know basis.

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