Helping friend whose son has just been diagnosed with autism

[flockwallpaper]

I just found out that my friend's lovely little 3 year old has autism. It must have come as a shock to his family, even though they suspected that something was the matter. I want to be supportive but not really sure what would help, if anything.

If any of you have a child with autism, is there anything helpful that a friend could have done in those early days that would have made things easier or more bearable?

TIA

my friends could have just been there more and not panicked not knowing what so say and never speaking to me again!! anything to show you care i think is a winner, i text my brother and sister when my ds was diagnosed as was in tears and didnt want to ring (i knew he was autistic and had pushed for referral to see what was wrong but still kind of shocked when i was right - he was diagnosed autistic at 2 and so quickly it must have been glaringly obvious!! hes 4 and a half now btw) neither of them even bothered a text back, i got a message through my mum saying "well you thought that didnt you so i dont know why your upset!!" personally i think just be there is the biggest help you can be, wine and chocolate at the ready and tissues if need be as in my experience the minute your child is diagnosed as having "problems" your number of friends dramatically reduces overnight!!

also perhaps point her in the direction of any support groups locally and offer to go with her?? i wanted to go so the ones near us but it took me ages to get confidence to go into a room knowing noone if someone had offered to come with me it would have meant the world!!

sorry to have waffled!

Thanks for replying meerkat. for the way your family responded. That's a great idea about offering to go along to support groups - I didn't that they even existed. How do I find out about them? Are they run through the national autistic society? I think my friend is expecting to get some information through the official channels soon, but nothing has come through so far and she feels slightly in limbo.

Be the one friend that doesn't say 'oh don't worry, he looks fine to me, probably very high funcitoning'. Don't mention einstein or rainman either. If you stick to those ground rules you'll be a very helpful friend indeed.

Look out for the NAS Help! courses or Earlybird too and maybe source a copy of 'More Thank Words' by Hanen. It is a book that gives parents something to 'DO' and is very simple to follow and helpful. Often a dx is given with a bye bye wave of the hand and parents are left desperate which when mentioned is treated with forms of therapy for THEM, when all they want is some pointers to help their child.

hth

I'd just like to say flockwallpaper, what a great friend you are !!!
A lot of people wouldn't even consider how they could help out another friend at a time like this, I know none of mine did.
My DS1 was also diagnosed with autism at age 3. If it hadn't been for the support of my Mum I don't know what I would have done. DH's family had the attitude of "He's not autistic, he's just a boy and boys are slower than girls, what do the professionals know?!" which made things really difficult as they wouldn't accept the situation. They've never been very supportive.
I for one could certainly have done with a friend like you.
Definitely check out the NAS website. Your friend (or you) can join your local branch of the NAS who will keep you informed of any coffe mornings/meetings etc in your local area.

What a brilliant, thoughtful friend you must be!!

I'd just add to what people have said, if you have children of your own, keep getting your families together (so many people seem to think that autism is like a horrible catching disease).

And just be there for her, to listen, have cups of tea with, nights out, or whatever, because mothers of children with SN still need a space that's theirs away from their kids.

www.nas.org.uk/nas/jsp/polopoly.jsp?d=1404&a=13601

this has some support groups on but im pretty sure there are many more. which county are you in? maybe someone on here knows of local ones to you? im in nottinghamshire and know some here if you happen to be in nottinghamshire by chance!

if she will have lots of practical issues, make practical offers of help (look after siblings, pick up a bit of shopping). ask what would be useful. Paceyourself- you don't want to overcommit then withdraw do you?

build up her and her family's sense of themselves as the experts on this child. Listen and learn about what is hard for him.
You can't assume anything from learning about other autistic children because autism is about your sensesprocessing being unbalanced. So he'll be very unlike other children with autism.

If you're out together, set a positive cheerful example for other parents. Never purse your lips at his behaviour.

Above all, follow her lead as she finds her way

Aw what a good friend you are.

As well as having the diagnosis being an upsetting and emotional time because of your feelings for your child, it is also hugely uspetting when people react negatively to the news instead of supporting you.

Things I have found helpful have been

• a sympahetic listening ear
• words of encouragement (I have been sat on my kitchen floor before crying myeyes out surrounded by all DS's autism paperwork and a friend on the other side of the phone has lifted me off that kitchen floor by letting me cry then reminding me I am strong and can carry on and fight for the help my son needs)
• showing a genuine interest in my son's 'quirks' and wanting to know what makes him tick and how to help him when in his company
• adult company when I am not mum, even a glass of wine round at a friend's house without dcs or a cup of coffee
• not judging my son's behaviour or my parenting and accepting we are 'different' and carrying on loving us regardless

Not all of the people around me stayed when I opened up about DS's autism - it thinned the herd and in a way I am glad of that. The people around me now are true stars, real friends.

She's lucky to have you.

Take her out to lunch so she can tell you about it several times.

Don't tell her he isn't that bad or ask if she's sure about the diagnosis. Don't tell her about every un-autistic thing you see him do.

Ask her how you can make things easier when he's visiting your house or out with you.

Take her out for drinks so she can talk about it even more.

See her through the different stages of shock, grief, anger, etc and accept each one as part of the process.

What a good friend you are.
Worst reaction: even worse than denial, has been people treating it as if my DS had been diagnosed with a terminal disease. It's tough, but last time I checked nobody died.
Best reactions: the colleague who put me in touch with a friend of hers whose son has been diagnosed years ago; the friend who's read all the books on the condition; the friend who includes me in everything she does with her DS; the other mum who said "ah, that's why he doesn't talk much" when I told her and has behaved JUST THE SAME afterwards

Thank you so much for all your kind and helpful replies. So much good advice on here, I think I will print this thread out and keep it.

I've ordered a second hand copy of the more than words book FNN. I thought I might flick through it first to educate myself before I pass it on to my friend. Lingle, your advice on pacing myself is excellent. We all have busy lives don't we, and I want to be in it for the long term rather than being there at the start and losing contact afterwards.

Hello meerkatsandkookaburras i've seen that you say your from nottingham, i'm also from nottinghamshire, Blidworth. Me and my partner are fighting with kings mill hospital trying to get them to pay attention to our son who we believe is autistic but they dont seem bothered. Matthew is nearly 4 years old and was born 13 weeks premature. He still can't speak, he has major behaviour issues and hits out alot also constantly bangs his head purposely. Getting him ready in a morning is a big fight and we are frequently attacked. I was just wondering if you have any advice which may help us in getting a diagnosis/doctors just to finally listen to us as we have been pushing know for 2 years and feel like we are banging our heads on a brick wall. We recently have had some family photos taken and the photographer himself as a 18 year old autistic daughter, we didnt mention matthews problems to him but he himself picked up on all this and said matthew is autistic like his daughter. Please can anyone help?
Thankyou Kerry x

Ask your GP to refer you for a second opinion to a different hospital. Apply for a statement of sen (see IPSEA website) not only can a statement bring support in nursery and school but it can speed up diagnosis as there is a statutory timeframe. Self refer to an ed psych and speech therapy. You need a team to diagnose autism. Contact Elizabeth newsom centre in Notts as they might agree to take a referral.

OP, how nice and thoughtful of you.

The thing I would find really supportive is if a friend/family member spent some time reading about ASD so they had some understanding of the condition and how it can affect a person. Also don't feel shy of asking questions about how she feels is the best way to talk to him, deal with any problems he might have - although reading about it is useful, also bear in mind that children with autism are as different from each other as nt children so one size does not fit all - the best way to support her is to try and understand her ds as she does.

If you can, offer to look after him occasionally if it will give her a bit of respite.

Above all, make her feel that you'll love him as much as you did before his dx, and that just because he has a diagnosis of autism he is still the same boy he was before.

I wish my friends and family took the time to come on MN and ask how they could support me. You are a very nice friend

Kez it might be an idea to start a new thread on this section, you should get lots of advice and support. Definitely go back to GP and push for a referral, it sounds like you really are being neglected.

You are a very thoughtful friend. I only wanted to echo what has already been said and recommend a book called 'let me hear your voice' by catherine maurice. Its written by a mum and gives a lot of insight into how it feels when you first get a diagnosis.

Flock - compile all these suggestions and suggest to MNHQ that you write a MN Guide to being a Good Friend of a parent who's just received the diagnosis. (Snappier title needed, obviously)

I can think of a good few people who'd benefit. Present problem solved for xmas 2011!