Best friend's ds has autism ( I think) but she hasn't told me

[rocketgirl22]

My best friend and I have been friends for almost thirty years but now live some distance away, but our friendship has stayed as close as it ever was. I respect her hugely and would never want to hurt her, which is why I haven't spoken to her directly just yet.

I am godparent to both her ds and all of our dc are close. Over the years I have noticed her youngest ds has quite extreme behaviour issues, these have become increasingly pronounced.

At 10 yrs old it is quite obvious to anyone that something is wrong. He finds it difficult to talk or engage with the others (he can speak but chooses not to) he does strange fits of dancing in restaurants or lies on the floor. He rocks a lot and comforts himself with his thumb. He hangs off the other children or constantly prods them but doesn't actually speak or join in. My friend did once tell me something about an assessment but didn't elaborate and the moment was lost.

I really don't know what could be wrong with him, I am definitely not an expert but I know something is, and she hasn't told me. I don't know how to ask her if everything is okay as surely she must need some support?
Or maybe she prefers not to acknowledge it. She struggles terribly with him when we go out together, and it is beginning to feel like the elephant in the room, as I don't know what to say.

I don't care how her ds behaves, it doesn't bother me in the least, I love him to bits. I just want to be there for her, if there is indeed something wrong it must be hard for her to deal with.

Anyone with advice would be greatly appreciated.

I think you sound like a lovely friend, OP, and I agree with pannacott. I found it hard to tell certain people about my DD’s diagnosis - not because I didn’t want them to know but because I just couldn’t find the right way or time to tell them. It’s such a big conversation to have. I’ve only just told my best friend, several months on.
Could you meet up just the two of you and ask her gently if she wants to talk about her DS?

Nothing is ‘wrong’ with him, he has Autism, he’s different but he’s him. I’m not sure why your friend needs to discus it, you have know this child since he was a baby? He hasn’t changed as such, he’s just different than others his age. You can still be there for your friend and her son, your already there for her. For me as a mum to 2 dd’s With ASD the most important thing is that my friends don’t treat me any different than any other mum, a few of my friends disappeared when my first dd was diagnosed, maybe they were scared of the unknown or didn’t know what to say? Say nothing and continue being her friend and supporting her.

Danger

Yes I would imagine she would hope he would simply grow out of it, she has been saying for years he is a monkey and he needs to be far better behaved like his brother.
When they were little it was completely under the radar, as he has grown up it now isn't.

I came on MN to ask how to best deal with this, no one has told me to outrightly ask her, I am grateful for the guidance, and the insight. I can be a better friend that way.

OP - I understand. I think you just need to be there for her at the moment. I was incredibly stressed when my child couldn't seem to get anything down on paper and didn't have a clue when it came to football. Everyone else was talking about how their child was in the 1st team and how amazing their reading was.... it is isolating. Your friend will talk when she is reading. There has to be a degree of acceptance personally first in order to be able to speak openly.

paddling That is good to know you tend to talk to other friends in a similar position, I hope she is quietly getting the same support, after all they are best placed to offer advice and exchange ideas. I don't take it personally as we are too long in the tooth for that, and I have different friends for different areas of my life so no reason why this would be any different.

lovemusic I have known him all his life and was one of the first to hold him when he is born. Of course he is more than just a label, he is himself, and we are adore him. We always have, my dc especially, they do have a good relationship too.

I think you sound like a really good friend.

I'm in a similar predicament, I have a friend whose three year old has strong Autistic traits. I really want to her know what I think but so far, if she mentions anything about, her "DS speaks in an odd way, he hates having to be hugged or touched". I will tell my friend that you can get your DS seen by an Occupational therapist or have a speech therapist looking at his communication skills. I don't think I will say anything but will signpost her to professionals who could help.

It's not so much about putting a label. I would worry that the child wouldn't get the support and the behaviour is played down to being " fussy child".

If my friend thought something was up with DS, I would want to know. But everyone is different.

danger

Yes I understand that entirely, having had something similar years ago (not the same )with my dd and her health, first I had to process it and be okay with it, and then to talk to others. In that precise order.

I too, didn't want to just talk before I had come to terms with it. It was for a different issue, but I had a strong emotional reaction to it as did my dh, and I didn't/couldn't tell a soul not even my own mother.

I will remember that situation when I am with my friend, thank you for your help. All of you.

I would suggest you speak to her about it as I said up thread.
Her way of dealing with his behaviour makes me think that she has absolutely no support at all and she is extremely stressed.

If she was talking about this to other like minded parents she may have found things to do to help her child and that parenting him the same as his sibling isn't going to work.

I really think you need to speak to her about it, other wise who else is she going to open up to if she can't open up to you.

I think you might have to just leave it up to her for when she wants to share with you.

Both my children are on the spectrum and we haven't always had positive experiences when sharing with other 'friends'.

I'm not suggesting you're like that OP, but just she may have been hurt before when she opened up like I was so now she is more selective of who she tells.

You dont have to do anything to support her. Just be there. 😊

You sound like a lovely and supportive friend OP. I totally agree with Red and others who've suggested she may just be really struggling to come to terms with this herself, so saying it out loud to someone else becomes such a big thing. I was exactly like this when my ds was young, when it was becoming clear something was amiss. It became the elephant in the room even with family for a long while. Saying it out loud to someone else makes it real, and makes it go beyond the "all children do that" kind of thing (which is what I'd try and tell myself when I was trying to come to terms with it). Having to accept your child is different is a very hard thing to do.

If she's like me, she'll feel massively better when it is out in the open, and she can see how much support you can offer. But I do think it's still up to her when she feels able to talk to you. Some very good advice here about ways to make it easier in the meantime, eg meeting up in less busy places etc.

rocketgirl22 you mentioned stimming earlier and asked what it was. Sorry if someone has already explained it to you but you may find this helpful. My DS is an arm flapper.

www.autism.org.uk/about/behaviour/obsessions-repetitive-routines.aspx

At 10 yrs old it is quite obvious to anyone that something is wrong. I think this might be why she hasn't told you anything. Even if he has autism nothing is wrong with him.
And you are right, the label doesn't matter, therefore it shouldn't matter whether she's told you or not. Focus on offering support to her. Tell her your worried about her. If she needs help offer it to her. A diagnosis is irrelevant to you being able to be a friend to her.

doubletrouble

This was my worry all along.

That she simply has no support, no way of asking for it that she can put into words and many things that are happening are expressions of real distress.

The drinking is out of character especially. It is like a call for help.

I thought I might go out for an evening with her rather than with all the dc, and just follow up on the assessment comment. If she closes down, I will leave it, and if she opens up then she might want me to know.

Being with her over the weekend I can see she is exactly as you describe highly stressed.

I just sent my friend a text of your post, and told her I'd posted about it being 'real' and ger experience. She just text back and said (and yes she knows I'm on here and is lurking- high ) and here's her reposnse:-

I can understand what her friend is going through totally. Apart from the fact I did not feel it was real until the diagnosis and I officially told everyone. It was that people wanted answers I could not give. Why doesn't he talk? Why does he hide his poo? Why won't he concentrate in school? Why won't he hold hands? And you know what he's like there's a hundred other things.
But I felt like people wanted me to give an answer and I until I had an answer I could tell them nothing. Let's be realistic it took 3.5 years and I'm still fighting with fucking school. Despite all the plans that should be in place! I can only suggest she does what you done for me, and that's be there. If and when she is ready to talk she will. But tell the person who posted that it may come out as a flood of tears!

That she simply has no support, no way of asking for it that she can put into words and many things that are happening are expressions of real distress.

That sounds to me like she doesn't as yet have a diagnosis for him. We had zero support in place before diagnosis.

Frusso

It is a matter of knowing what to do. If you know a child is autistic and they are lying on the floor in a cafe then that is obviously perfectly okay for that child, and everyone would be fine with that.

If you have a ten year old whom is lying on the floor (my child for instance) and she does not have autism this absolutely is not acceptable, she is clearly playing up and I would not be happy at all.

The reactions to each child would be entirely different.

Not because there is anything 'wrong' in the way you imply, but because it would explain why those things were okay for one child and not the other.

snowy

Thank you for that post. I hadn't thought of it that way. I guess many friends will be asking lots of things. I hope they would have the good sense not to, but some of them are quite full so maybe she is just biding her time and waiting for answers.

If it was my child, I would find the wait agonising actually I am not good with no knowing (nor is she come to think of it) and 3 years of waiting is truly terrible. Why does it take so long?

She mentioned the assessment about 9 months ago, so how long from the assessment would you say? Is it really that long?

What happens in the meantime? I know she has been called to the school a few times for biting and stealing etc.

Yes rocketgirl22 it really can be that long. Ours took years and a change of schools, cue exasperated senco emailing DSs doctor and we finally got the help I'd been begging for for so long, and I mean begging. I just wanted someone to help/understand/listen, most of all help 'them'. It's a bit of a postcode lottery as to the help you get, what you can access, etc, my DD went through her entire primary school life with issues before her secondary school picked it up, on her first visit.

Rethinking again, he is 10 now, he probably isn’t being supported (I assume from your OP). If that’s the case, I’ll let her know your concerns.

Here’s another thought. She might not know there’s something “wrong”. Yes he’s 10 and his traits should be obvious. But you would be surprised by the number of parents who are in denial, may think their DC’s are highly strung... some may even think because their DC’s are coping brilliantly academically ( even though they show a few odd behaviours ). There couldn’t be anything “wrong”.

I believe my daughter has ASD, but we can't get a referral, because she masks really well at school. I have learnt from experience that if I share my concerns with friends, they either try and tell me that "all kids do that", or insinuate that I am trying to excuse her behaviour by applying a 'label'. ASD is so fashionable, after all.

What happens in the meantime? I know she has been called to the school a few times for biting and stealing etc.

I imagine there will already be something in place for him to help with the behaviours. This should all be being reported back to the Paeditrician though as it helps build a picture for them.

areyoufree

Wow, so you opened up to your friends and their reply was to minimise your concerns?

So, she does talk to you about it a bit if you know about her being called into school. Just wait for her to be ready to share. It does seem like you want more detail.

These conversations re behavioural issues can be complicated, its not straightforward. I might say my son has 'sensory issues' or something and a friend who doesn't have the full picture will pipe up about what they know another child with sensory issues, but sensory issues is a very broad stroke explanation and to talk about an individual child can get very involved.

If you don't live closely she may have support from people who see her children day in day out. I don't live near any of my lifelong, closest friends who I meet up with every few months or so but I have a group of school mum friends who I talk to, who have children with their own issues and they see DS everyday, it's a full picture and so the conversations are much easier. When I see my close friends I don't want to rehash the ins and outs of everything.

rocketgirl22

Unfortunately I don't think that my experience is unusual. Part of it is well-meaning, because they want to reassure me. But, there is also a belief that many parents look for diagnoses rather than find effective ways to address bad behaviour. I have never actually seen this, so am not sure where the idea comes from.