Advice appreciated - I want to offer support but unsure what to say/what not to say...

[TheDiogenesClub]

Hello,

A friend's just-turned 2 year old DS has just been diagnosed with mild autism. He is a loving, happy little boy and to my knowledge, his difficulties at the moment mainly centre around communication and his struggle to understand what is being said (he doesn't talk yet).

His parents have been pretty shocked and devastated by the news, and are still coming to terms with it and what it might mean for the future. I would like to know how I can help. When we meet up, I am conscious of not wanting to talk too much about my own DS in conversation (in case it comes across as boastful, although there's not anything to boast about in particular), but then I don't know if that's actually quite an patronising approach. I've already hopefully made it clear I am there to listen/be a shoulder to cry on.

Can anyone who has been in a similar situation (either as the parent or the friend) advise on what you found helpful, and conversely, what you found NOT helpful? I am just so worried about saying the wrong thing. Thank you so much.

What age is your child? If your child is the same age, it may be particularly difficult for your friend, as it will be obvious that your child is more able, developing normally, and your friend may even find that painful to be around at times. If your child is older that is likely to make matters easier in that regard.

What is helpful - taking your friend's lead - if she wants to talk about autism/appointments/speech therapy, show an interest, if she doesn't want to discuss it, then fine, discuss normal non SN related stuff. Also show that you have faith in her and her judgment of the situation, don't try and be over optimistic.

What is unhelpful - any mention of Einstein! or dogs canary's brother who had speech therapy/didn't talk till age 8 and is now the prime minister/brain surgeon. Also be sensitive about your child's normal language development - obviously be proud of them, but don't, for example, say how hard it is when he asks questions all the time, or say that you would rather have the quiet of a child not talking etc.

obviously your child is a big part of your life, so it's fine to mention it. but if your friend can't cope with that and distances herself, (and it does take time to come to terms with a diagnosis), then don't blame yourself, but try and think kindly of her. It's common to feel pretty awful for the first year after a diagnosis, and the pre-school period tends to be v isolating for parents to kids with SN

Thank you very much, and sorry for the late reply. Yes: it's strange but I have had to stop myself from mentioning a friend's child/cousin/step-son (and so on) who had autism and excelled at school, got a great job, etc, etc. I know it can't be helpful, as every child is different, and I'm sure my desire to mention it stems from my own awkwardness regarding the situation. I know I want to reassure and be positive, but I'm not sure how, and in fact, whether I should at the moment. Thanks again.

Oh, and my DS is about ten days younger than hers, so yes, they are the same age. My friend has cancelled a couple of meet-ups since the diagnosis, and I want to invite her over tomorrow, but I don't want to pressurise her.

She might prefer to meet you without the kids, if you could manage a coffee/drink/cinema trip? Obviously I appreciate that childcare doesn't grow on trees so that may not be a runner.

In terms of reassurance/positivity - follow her lead/mood, don't try and force it on her. Some of the best responses when DS was that age were along of the lines of - I'm sorry, it sounds v worrying I don't know what to say. I.e. just allowing me to feel what I was feeling.

If she is an internet type, you could recommend this board to her, or netmums special needs board, or special kids in the uk website, all good places for support if she wants to talk to people in a similar position. I think the fact you are considering carefully how to support her shows you are a great friend, but because the children are such a similar age, she may find the friendship difficult at the moment (or may not, obviously I could be projecting!)

When she is ready there are some things she can do for herself.

Prognosis is good for a child at the milder end but ONLY if you get appropriate intervention and that is by no means a given.

'Hanen - More than Words' is an excellent starting place for teaching her skills that she can implement herself.

Putting herself on a PECS course run by Pyramid will also give her many skills in how to get her ds to communicate and potentially talk.

Finally, she will need to research ABA to assess whether it is suitable for her and her family. It is the approach with the best outcome but the path and journey you need to go on to access it is a hard one.

I lost a lot of friends because of not being able to manage doing three things at once: 1. controlling DS1's behaviour; 2.dealing with the ordinary demands of friendship eg having a conversation (let alone one which isn't about special needs); 3. manage my emotions when I clearly saw DS1's issues next to his peers.

Through all of this, my nct group continued to have a weekly meet-up, and continued to hassle me to come along. They helped me when ds1 and dd were at opposite ends of the playpark, and they just laughed or nodded understandingly when we arrived late and left early (often with a screaming ds1 in my patent fireman's lift). And now, when I moan or complain they listen, and say 'but he is lovely, you know'... and I believe them, because they were there for us and they do love him.

I do wish professionals wouldn't say 'mild' when a child is diagnosed at 2 because tbh they have no way of knowing how that child will develop :bitter experience:

That aside (and obviously don't say that to her) when ds1 was diagnosed i did lose a lot of friends - especially those with the same aged children. The ones I kept (lovely people) were always happy to listen, said nice things about ds1 (e.g 'oh you are funny ds1'), didn't look at their feet and change the subject when the A word was mentioned, and were always quite honest. I remember one friend saying to me (and this was 10 years ago so it's stuck) - that she could now see there was a problem that initially she couldn't, but now she could. At a time when many friends were too embarrassed to even mention the word autism it was such a relief to have someone I could talk to openly. Her son is 2 weeks younger than ds1 and we're still friends now so it can happen :)

You can open conversations with things like 'do you have any more appointments coming up?' It's neutral, but it gives an opener for her if she wants to talk.

Yes I hate the 'mild' autism thing too. Of course it is mild. He is 2. Says nothing about how he will develop but sets the parent up to have low expections from services.

yep, just paves the way for the 'of course, other families are struggling so much more than oyu' speech which will come (from SALT, OT, hv, oooh, just baout anyone really)

OP: try to understand if your frined does not want to meet up with children for a bit. it might be quite painful for her, especially as your children are so close in age. would it be possible for you to go out in the evening with her?

a neutral setting, with no children, might mean she feels more 'in control' of how much she shares (or not).

well done on holding off on the brother's dog's cousin's best friend.... examples. they really are the last thing most people want ot hear.

I wanted my friends (the ones who were obviously going to stick around) to just be the friends they always were. a bit of normality in my life, I suppose. in the way that not everything in my life revolves aorund my children -not everything revolves around dd1' ASD either. but listening was good, if I needed a rant.

oh, one more - don't look for ways her ds is being typical. as in 'oh, my ds did that just yesterday, isn't that great? he's really coming on' kind of way - it's a bit like the einstein/brother's dog's cousin's etc stories.

My best friend is amazing with my dd2, she invites us round and doesn't make a fuss if dd kicks off or does odd things. I hate the "I don't know how you manage" and the "I'm so sorry" comments that I get of some people.
My friends dd is 2 and just over a year younger than mine, and I do find it hard that her dd talks, but my friend is always ready to offer comebacks to any comparing that I do, "oh but justa jr is always laughing/good concentration/watches tv nicely/etc."
Group situations are hard because the differences in dd2s behaviour/development were so noticeable, but soft play is always a good place to go.

The fact you are wanting to support her is great. I found friends reacted very differently and always felt that no one ever really appreciated what we are going through. It takes time to come to terms with dealing with the fact your child is SEN - and like with grief it comes in stages so differing approaches will be needed at different times. then even with that different times of the year need different considerations - Christmas for me was always a tough one as DD was just oblivious to it all.

Key things are don't bang on about how amazingly gifted and talented your child is, of course talk about him - but theres plenty you can talk about without trying to compare. Those that gloat about thier genius children were the first to be dropped as friends! Its almost as if they think SEN problems are contagious and they need to show that they are not affected.

Next is to not give false hope. Miracles dont generally happen. He will not wake up one day and no longer be autistic so as already mentioned never refer to the friend of a friend who you used to work with next door neighbours sister in laws best friend from school who is now a nobel peace prize winner etc Focus on the positives of the here and now about what he can do.

Follow her lead on tactics on how to best interact with him, there is no one size fits all way, with time they will know the best ways so learn from them about what works - never assume that what works with one child will work with another.

Find something to do that doesn't necessarily involve the children - that always helps to talk about something other than children. But equally keep the balance that you also do things where the children are included and it is something he will enjoy doing.

Some times I want to talk to friends about it, sometimes I don't, sometimes I want to scream about it sometimes I want to laugh about it, and best of all sometimes I really haven't a clue how i feel or what mood I'm in about it all - its a rollercoaster of emotions so expect the unexpected.

And finally do not ever ever start a conversation with 'I read something about this in the Daily Mail'..........

I agree with much of what's here. My list:

Don't

• shuffle and change the subject if she brings up the A-word

• say "I don't know how you cope, I couldn't"

• stare in poorly disguised horror/shock/disgust at anything 'autistic' he does

• tell her about anyone you know who seemed autistic when they were young but "are fine now"

• look at him as 'autistic' as if that he is all he is. He is not a different species.

• don't not talk about your ds but try not to sound boastful about something which is just a normal stage of development. It's tedious and painful hearing about how great another child is when they're just doing something normal (eg talking)

Do

• ask if you can help by looking after her ds or other children sometime - or invite him round for a playdate on his own with your ds

• try your best to include him in everything that happens - don't give up on him if he doesn't respond first/second/third time

• tell her/him how sweet/funny/cute he is

• look for everything positive he does (eg engage with you, copy another child) and show her you can see this

• look at what she does and how she is with him and follow her lead (this one will probably only apply after she's got her head round it, and done some research of her own about interventions etc)

Good for you for being so thoughtful - I wish my family & friends had made such an effort.

As others have said, be yourself and be as normal as possible.

Be sensitive that she may wish to meet up without kids and make that happen if at all possible.

Keep an eye on 'combinations' - I have one friend who's DS gets along brilliantly with mine 1:1 but actually when he's with another mutal friend's DC is a little bugger. Just be a tiny bit more aware of the children's interactions when there's more of them about.

Let her take the lead when suggesting things to do with DC's. Sitting quietly painting at a ceramic place may be exactly what your DS want's to do but it will be her idea of hell. Parks, soft play, running about places is where it's at.

Be prepared to do some work with your DC on play strategies - and tbh this is a tough one to get right because the last thing your friend will want is you helicoptering them or setting your DS up to feel that the other boy is 'different' but as they get older your DS may become more aware of differences and need help to manage that - for example, my DS had a terrible habit of just repeating people's names over and over again, and it (rightly) drove another DC to distraction. I managed that as best I could but the other mother could have been a bit more helpful in preparing her DS to deal with it instead of saying 'Remember WilsonJr is a bit funny'.

Oh wow, tons more responses, thank you. There are lots of useful comments here and I will make sure I take them on board. As it happens, I came back to ask for even more advice! I'm looking after my friend's DS along with my own for about three hours so my friend can get out for a breather and some me-time. The children seem to like each other (or at least, most of the time contentedly play alongside each other - it's difficult to tell when they are so young!).

Her DS has a repititive behaviour that he struggles to control; he likes to pull hair/faces (sometimes quite hard), usually other children's, and it seems to be if they have a toy he wants, although sometimes it seems to come out of the blue. I wonder if it could be for sensory stimulation? He's done it to DS a couple of times in the past: both times I was prattling on at distracting my friend, who's usually very much on the ball to prevent this behaviour before it happens.

My question is, if my friend's DS tries to do this when I am looking after the boys, how can I stop him in the best way? I am thinking of just gently but firmly moving his hand and say, "No, we don't do that" and trying to distract him. But I'm worried that if I do the wrong thing, I could confuse/upset him (especially as his mummy won't be around) or negatively impact on his behaviour. I've googled a bit, and it suggests overly praising good behaviour, but as he is very young and also currently struggles with language, I'm not sure that would have much of an impact at this stage. I was thinking of maybe taking along a squidgy ball/toy which he might like the feel of, which might distract him from the behaviour. I'd obviously run this past my friend first. Any ideas/advice? Also please feel free to tell me if I am being ridiculous and overthinking this, or even maybe getting over-involved when it is not my place.

I'd ask your friend!

The key thing is to monitor his response to whatever you do. DS1 for example LOVES it when people get cross, and he used to find the word no simply hilarious. So saying 'no' in a cross voice was the fasted way to get him to do whatever it was again.

I would- in the first instance- remove him gently and use a neutral but firm voice - perhaps even an 'uh huh'. Then distract.

But again it's something that will vary from child to child. If you get a particular problem behaviour arising I would definitely ask the mother.

all children are different. With my ds, I distract as much as possible, make sure he has his own space so doesn't feel crowded and generally try to keep a very close eye so I can intervene and head off difficulties. However, don't be afraid to ask your friend what she does. It's great that you are looking after her ds and I know I would have loved it if I had someone who could occasionally take care of ds without me having to worry about him being loud or difficult. It would also be lovely if he could have been with someone who accepted his obsessions like we have had to without making a big fuss. Just taking that responsibility off her for a few hours is like gold dust.