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.

In my experience, if you are a perfectionist it can be very hard to come to terms with having things in your life that are outside your control. I’ve been in this situation, and have found myself feeling envious of people who are much less inclined to ‘perfectionism’ but who aren’t having to deal with the particular things I’m dealing with that are outside of my control. I’m projecting my own thoughts onto you and your friend here, so do disregard them if they don’t resonate.

Does her child have additional support? I ask this as I wonder whether the professionals involved know he has a diagnosis and it is just personal friends who your friend does not discuss it with.

If its the former and he has a diagnosis and receives support then you probably have to accept that for whatever reason she does not want to talk about it, like the elephant in the room.

However if he has no support then I would be concerned, I never think of a diagnosis as a label and although a diagnosis wont change the way you see or behave with him it can make a world of difference to the support he receives.

Some parents really do not recognise ASD and assessments can be influenced by parents in denial. Do you know any other friends with children on the spectrum? It may be easier for one of those parents to approach the subject from experience, if the child has no support.

I think you sound like a lovely friend.
My daughter has autism she is obviously different to other children but it still took me along time to tell people. I ended up sending my best friend an email as I couldn't find the words.
I don't understand why you can't do all the lovely things you mentioned in your previous post anyway. Just because he has a diagnosis or not it doesn't really change anything. I would love someone to support me in the way you are suggesting.

2017redblue

You hit the nail on the head, I don't think she can quite bring herself to make it real by telling others, not even her closest friends.

All the while we are pretending everything is fine, she seems okay, but then he will do something and her stress levels rocket instantly, and she starts shouting at him to stop. And then he gets worse and then she gets so upset. It is really hard not being able to say or do anything whilst this is happening, I try to soothe him but he doesn't like to be touched I know this, I try to support her by soothing him, but I am not sure what I am doing. Or if it is even helpful.

I am not sure they are getting any kind of support, no, not that I know of.

she is very stressed and tells me she can't sleep, feels ill, and is generally massively struggling

When she tells you this, does she explain why? Does she have other things going on in her life? I'm just wondering whether she's trying to give you an opener for discussion.

I think it can easily become the elephant in the room. I had a similar scenario with two of my friends. I hadnt told them about my dd diagnosis and it was becoming odd as I was dodging questions about school etc. I decided to tell them both as it just felt false to not disclose it. One was brilliant and lovely. One was clearly uncomfortable and has more or less dumped me. I am still glad I did it because it has shown me all I need to know about her.that said you have to wait for her to tell you.

dinosaurs

I will do everything on the list, and more, but obviously I don't want to so much that it alerts to the fact 'I know'. It feels like a delicate balance of supporting her quietly from the sidelines whilst not talking about it.

It is just strange for us because we know each others oldest, dirtiest most dreadful secrets and we know each inside out, as only very very old friends can, and yet this is obviously very different.

I will learn everything there is to know in the meantime. So I don't make mistakes and I can be a good friend.

babyboomers

Yes she has problems with her dh, she said the pressure is hurting their marriage but she talks of general stress, she tells me about these things, but doesn't mention anything else.

What @nanna50 said!

I think a label does access help. I think you are a lovely friend. If I had a lovely friend like you who offered help or mentioned my DS and asked how he was doing I would be glad,

You can only ask and then if she can’t talk about it that’s fair enough.

If he isn’t getting any help and is non verbal then that is a real shame.

Do you really never have back and fro chats about the DCs school, what you think, how you’ve dealt with problems with school yourself? I’m always moaning/praising my DCs school ;-)

Cansu

I am amazed that your friend would feel uncomfortable, I would feel nothing but relief if my friend spoke to me about this, and it goes without saying that I would support in every way possible. It is better to know who your real friends are canu.

As you rightly said, it feels false. I don't mind, but it isn't how we usually are.

Also a little heads up - these things don’t come from nowhere and often as a parent you can see yourself in a child and their behaviour. That behaviour may be ‘normal’ for you because you were like that (adhd is certainly part of my DPs life and he didn’t recognise it in DC until shown). Also the very nature of ASD may mean she (or her DH) have traits themselves and that can compound a parents ability to deal with those issues in a child. (Women often manifest ASD differently and are underdiagnosed).

She may miss/minimise certain behaviour because of this.

I don't talk much about my teenage dds ASD. Why would I? She is who she is and I want people to take her as they find her and treat her like everyone else. I haven't even told one of my siblings because they have been judgey in the past about her behaviour, saying I don't discipline her properly. Maybe too because she is older, I just don't feel it is appropriate to be talking in detail about her like that to others. I cannot stand to see people going into detail about their DCs problems on fb etc, I would never embarrass my dd like that. I leave it up to dd whether she tells her friends. I am definitely not ashamed or embarrassed and I highly doubt your friend is either to be honest. There is nothing to be ashamed about, but perhaps if this is your general attitude towards autism or disability, maybe she doesn't think you are the best person to talk to about it?

Maybe meeting up with us means she can have a break from reality. She starches their shirts carefully, and dresses up (she never used to) and almost it is like she wants it to be a certain way.

Ds will then do something to upset her, I won't always have even noticed what it is, but it triggers a chain reaction and she gets so worked up like he is ruining things. It is that moment when I usually ask him to come outside with me or take them to the loo or show him a photo on my phone. It can go either way but I hate to see her so flustered and so stressed. I will hug her, but can't bring myself to ask her, something stops me from saying the words. Instinct that she can't face it maybe.

I can see why you OP might be hesitant to do lots of supportive things without any kind of discussion with your friend.

If I'm struggling but not telling anyone (for my own reasons, good or bad) and a long term friend with whom I have an established relationship of a particular type, suddenly starts 'doing things' that they hadn't done before, it would feel really strange. E.g. if they would turn up at my door with a hot meal. Or would suddenly offer to take my kids out for the day, if they had never done that before. It might be very very helpful, but it would feel like they were making some kind of point without ever saying anything. It would be awkward.

However OP, your friend is telling you that she is struggling, albeit not why. Next time she mentiones being stressed, not sleeping etc you could simply offer support then, asking 'what can I do to help?' and offering options such as taking her DS out for a day if that would help. You don't need to know that she is struggling because her DS has ASD, or even that her struggles are related to her DS at all. You can still support her if/when she says that things are hard at the moment. Even if it is just by taking the lead next time you meet up, rather than leaving the organising to her all the time. And then find a place that is more autism friendly than a restaurant; most children, your own included, would probably prefer a cafe by a park so don't need to know your friend's DS' diagnosis for this, you can make it about your own DC's preferences.

You sound like a lovely friend btw.

Doe she go to a mainstream school?

Just saying my friend's ds has asd, and she took about 6 months from diagnosis before she told friends. I knew the day she had it, because I have experience with autism and had been supporting her, but she didn't want others to now- yet, until she got her head around it, although it was obvious, all the signs were there.

But she told about 6/8 (I can't remember exactly how many of us were there) of her friends at the same time during a 'girls night in'. She had a few drinks then said 'I have something to tell everyone'.

In all honestly no one was surprised. But she totally broke down, and one of the things she said was 'now it feels real'.

So even though she had been dealing with school, the child psychiatrist, psychologist, GP, SALT and everyone else. It was that moment of telling her friends that made the situation real for her.

missduke

I agree completely there is nothing to be ashamed about. I think sometimes she does look embarrassed though, incredibly embarrassed when he is lying on the floor and we can't get him up. It is because other people stare so much and were tutting etc which wasn't helpful. We have been asked to leave certain restaurants that are supposed to be child friendly (?!!) I certainly didn't care, but she told me she was mortified.

I am sorry your siblings were judgey. The problem lies with them and not you or your dd, and it is absolutely up to you and dd who you talk to, and whom has your interests at heart. Only you can know that.

I wish he was older

and I could talk to him more, at the moment he doesn't like talking so I will have to wait until he wants to again.

Why does having a label matter to you?

I have been in the position of your friend where well meaning people "thought he might be Aspergers" actually he isn't - he has dyspraxia.....

My suggestion is that you are non-judgemental and make your conversations a "safe" environment - so that if she wants to discuss she can without fear of being judged. As a child with a spld I went through a period (pre diagnosis) of wondering if it was my fault

snowy

He goes to mainstream school and is a whizz at maths.

I think the 'real' part of what you said resonated strongly about your friend telling others. I am pretty sure the school must have noticed and must be doing something but who knows maybe they have missed it? It might be seen as naughtiness? (not a term I would use by the way)

My friend has started drinking so heavily in the last few months, which is really unlike her as she takes pride in her health usually. Sometimes I had hoped she would talk a little in those moments, but she just says her dh is a massive disappointment and everything is on her shoulders.

I agree re the making it "real" - she may not be at the stage where she can face up to this. I was in denial for a while and wanted to believe that this was something my child would grow out of. I also overreacted to anything connected to it and was highly stressed

danger

The label doesn't matter, we don't need one.

My conversations are 'safe', but by keeping them that way it becomes tricky and does not come naturally anymore as we are careful with every word.
For the moment that is just how it is.
I don't mind, I just feel she is internalising a lot and if she wasn't struggling I wouldn't be worried. But she is, and I am, because I care very much for her.

This may not have be similar to your friend but I have a DS with some behavioural issues. Its different because the source of DS's problem are known to all my friends but there's plenty of good friends who I never really talk to about him. I tend to only discuss his issues with friends who also children with various challenges. I find when I talk about to friends with children with only totally NT children, they really want to help and try to be reassuring by saying things like...'oh well my DS does that too'..or 'he's only 5'...or they give me advice based on something they have read (probably on here!) when there is really nothing I haven't read if it's in the public domain. Or worse a couple of friends have made suggestions about how I could improve his behaviour...they think they are being very very subtle and I do appreciate that but they are pretty easy to see through! I also find myself justifying and over explaining his behaviours and so I try really really hard not to that.

I know my friends are coming from a good place and I am not remotely critical, I have definitely done the same thing myself but really it makes it hard to open up because I get quite angry internally so I just move on. My friends with children who also have issues understand that it's really not normal, know when it's ok to laugh and joke about it as we're all in the same boat, its part of a big picture and its a relief not to justify and explain or listen to advice. And overtime those friends have become the ones I talk to about DS, and I carry on talking about other stuff with other friends.

It doesn't reflect anything about the friendships at all. In fact my closest friends who I turn to about almost everything, who I would call for a bereavement, illness, relationship trouble, are not the ones I turn to when i need to talk about DS. He's only one of my children after all, so I usually have plenty to talk about. The whole process is mostly subconscious. Ds's problems are not something I feel a need or responsibility to 'share' equally!

As a perfectionist I can imagine that the last thing she will want to admit to is a 'failure' or flaw in her child. It must be really difficult for her. I would think that all of this is the main problem within their marriage. The disintegration of relationships is a major problem for parents with children with additional needs.

Your friend sounds as if her DS hasn't been assessed yet and is still waiting for a diagnosis. As I think if he did have a diagnosis she would have been given some advice or an OT assessment and wouldn't be trying to meet up with you in a restaurant where he is obviously over stimulated.

I had two children with special needs - ADHD, ASD and sensory processing disorder. There is something called a sensory diet which really helps to understand what a child can cope with if they have these sorts of problems. Worth looking at. There is such a huge spectrum within ASD etc. and it isn't a one size fits all situation but you are definitely right in suspecting that he could be on the spectrum.

I would ask her how things are going with DS, how is he coping at school etc. Say that she mentioned an assessment before, ask if they were still waiting for one. If she opens up then you can offer your shoulder and ear. One of the main things is to talk about it when you have a problem like this as it is so isolating to have a child who is 'not normal'.

I would suggest a meetup in a quite, safe place with plenty of space. Unfortunately this time of year isn't very good for outdoor activities but a walk/run along the beach or a walk in a woodland is always quite good with an ice cream or a hot choc. at the end.

Good luck with it. You sound like a really good friend.