coming out of the asd closet - any tips?

[TheCrunchyside]

Until recently I didn't think ds had asd. Not quite sure why it took me so long as it is the simplest and best explanation of a lot of his behaviour and difficulties.

I think it was because he has quite severe motor and speech/auditory processing delays that i thought he was more likely to have general learning difficulties.

It was also because the professionals were divided. Some trying to reassure me that it was not asd as if that was the dx to be avoided at all costs.

M friends would say that he was not like their cousins/workmates/neighbours/etc ds who had ASD because that child had behavioural problems and wasn't so sweet and loving like ds. Generally the children they referred to were older and actually ds's behaviour is now much more obviously odd as he has left the pre-school years behind.

I suppose some of this prejudice rubbed off on me and I told myself that ds was too affectionate and cheeky to have asd.

I also wanted to avoid realising that ds had a lifelong disability that no amount of OT or SALT or hot-housing would ever cure (doesn't mean we've given up on him or his therapy btw).

Anyway I accept it now and want to say it loud and proud to all I know - "ds has asd"

What did other posters do? did they find giving their dc a label a help or a hindrance?

How did you tell them - were there any books or materials you used?

bump

I found a label helpful. Helpful for ensuring his difficulties were acknowledged by others.

To say 'he has autism' sometimes could make a situation okay, or allow us to change seats, or leave early or whatever. Before that asking for help or favours because 'my ds won't be able to cope' made me feel stupid and incompetent.

hth

Thanks Star. How did you tell your wider family and friends?

I just told them in a matter of fact way. Some of them denied it. Most of them ignored it and still do.

A decided I don't have the energy to carry them so they'll have to deal with it themselves, but I felt it was important that they knew because it increased the number of people in ds' life who knew how to handle him and who could make allowances. It opened up the opportunity for me to explain why sometimes some things had to be done a certain way.

I haven't said a word to anyone as I'm worried that people will tell their children and that it could lead to bullying of my AS DD. I do long to tell people though.

Also it is up to DD (11) who she shares the information with. To some extent, it is not up to me to tell people.

As DD gets older it may be impossible to keep this to ourselves as her behaviour does seem to be deteriorating. But whilst the ASD is mild I won't be saying anything.

DD read Luke Jackson's book "Freaks, geeks and Asperger's Syndrome" when she was diagnosed. I asked her to highlight sentences she identified with and we really learnt a lot about how DD thinks.

I have found a label useful for gaining access to services that ds has needed to use.. And for times where school haven't exactly been overly helpful.. ( example: I was pulled into school because they thought he had perception issues ... Well yes he does he's on the spectrum and this is one of the areas where he needs support... Etc).
So a label can help and protect our dc's a little bit.

Generally though barring on here I don't tend to use it.. Just because ds is ds not asd.. Iyswim.
People either accept him for who he is or not ( and that's their loss).

Have had a wide range of responses from friends and family.. And those who really care just see him and help him and us because they want to.. Those who don't lose out.

Perhaps my motivation is selfish. for a long time my family and friends have urged me to find out what is wrong so that a cure can be found.

At other times the same people have told me he's just a late developer. an asd diagnosis would might help get people understand.

But i also worry that with that label people might suddenly feel unable to do the odd bit of babysitting/inviting round that they used to. My SIL had the kids overnight a year ago. ds is actually no harder work but i think she is a bit intimidated by us talking about SN (even without saying ASD) and has said she'd need my mum there too to help her which makes it logistically quite difficult.

phoenixagain - it must be different if your dc is so high functioning but with ds it is obvious he has SN.

I tell everyone - makes me feel better :) Besides researching ASD, Dyspraxia and Dyslexia is my hobby :)

I have almost always found people supportive and that it helps to tell.

How old is your boy? tbh as an asd adult if i do mention it to anyone they think i am wrong . as i am sociable. the fact that a social gathering wipes me out the point of needing virtual isolation for the next two days isn't seen by them, ho hum.

he is nearly five.

I've never met any adult who has told me they have an asd. I would probably be really curious and ask loads of question which you might find worse

Actually it is quite rude that people say you are wrong. I have asthma and would be really shocked if someobdy told me i didn't just because they hadn't seen me have an attack.

oh i know it is rude. I think it is ine of those things that people deny in adults as well as children. High functioning just makes people even less convinced, yunno because it is all the same .

Asking questions is fine - being understanding if all my (learned) social skills go out the window because i have too much going on in my head is better though!

Has he started school yet?

Hope I did not offend you Crunchyside.

I realise different areas of the spectrum present themselves very differently and that it is obvious with many DCs.

When you do start talking to people about this I would love to hear how you have got on.

Before I became a SN parent I was always sympathetic to anyone in your position but I really did not understand the issues, even when they had been explained to me . I think I was probably quite patronising as well by being overly sympathetic

not offended at all phoenix - just sympathysing with a different set of problems.

Yes, HF, he has started MS with a 1to1 helper and seems to be enjoying it. Not really got to know many other parents as i work three days a week so don't do all the drop offs and pick ups

When we finally got a dx of ASD for DS(5), initially I wanted to tell everyone, so that they would know that we were grappling with something real; and then I gradually realised that some people have stereotyped ideas about "autism", which don't fit DS at all, so now I try to look at each situation and person on a need-to-know basis.

Because after all, it isn't MY personal info, it is DS's.