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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

152 replies

rocketgirl22 · 15/01/2018 09:51

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.

OP posts:
RidingWindhorses · 15/01/2018 17:54

What am I missing?

I'm perfectly aware the friend may rather believe it's bad behaviour than a lifelong disability.

But the upshot is that friend is labelling his behaviour negatively. I'm not judging her for it.

Aeroflotgirl · 15/01/2018 17:59

I think for me, the more I talked and told people about dd Autism, it made it real, and it was depressing. Sorry it was, that is mabey why she might not have told you. She also might be coming to terms with it, you are grieving for the child you thought you would have, and have a different child in its place instead. Things that other people take for granted with their children, are hard for those with Autism. For example foods, or loud sounds. Whether they will be independent, what will happen when they reach adulthood, do I need to be their carer until I am old.

I find it difficult to talk to people who are not in 'The Autism circle', as sometimes they just do not understand, and have to keep explaining all the time. Just be there, let her know you are there if she needs.

Doubletrouble99 · 15/01/2018 18:14

Aero - I think though, that the problem the OP sees is that her friend doesn't seem to understand that her child is not just being naughty but has an inherent problem. She is disciplining him in such a way that isn't suitable for a possible ASD child and so are her parents. This is a real worry, she certainly doesn't seem to realise about the sensory problems a child like her's might have with going to a restaurant. So I don't think she is just not accepting it, she sounds like she doesn't have a clue.
I think the OP has an absolute right to ask her best friend how she is coping and if there is anything she can help with especially as she now tells us that she will be looking after her god son and his sibling for a week in the Summer.

Original poster
rocketgirl22 · 15/01/2018 18:14

aero

I can understand that totally.

I hope she finds a circle and friends she can share this with that understand better than me. She is the most positive person I know.

OP posts:
Notreallyarsed · 15/01/2018 18:44

@rocketgirl22 I wasn’t offended by your post, and I meant to get across that I knew you weren’t being negative deliberately so I’m sorry if it seemed like I was having a go.

“Strange” and “wrong” were two words that jumped out at me, and talking about his interactions with other children or speech saying he doesn’t do things as if it’s a choice. These were the things I meant.

Selective mutism (the inability to speak at certain times or with certain people) could be the cause of him not talking sometimes despite being physically able to speak. I’m not diagnosing just offering a potential reason, there could be others.

His prodding of other people could be his attempts to join in, and he just doesn’t know how to.

The thing with autistic people is that when measured against NT (neurotypical) behaviours, we won’t be able to conform because in a lot of instances we don’t know how. So not measuring by NT standards is a really good starting point.

I really am sorry if it seemed like I was having a go, I didn’t mean to at all. The fact you’re willing to learn and want to know is a really good thing.

Aeroflotgirl · 15/01/2018 18:53

Just by skimming through ops posts, as I have my active ds bouncing round, I think that she is finding it very hard accepting it, and coping.

Original poster
rocketgirl22 · 15/01/2018 18:55

notreallyarsed

So having reread my original post I can see why you think that. I am sorry. Bad choice of words and definitely I didn't mean to imply he was wrong in any way. If I could rewrite it I would. I am not known for my tact sorry if I offended you.

We will find ways to support him, and do whatever it takes to put him at ease. The best thing I did was to post on here. So many helpful posts.

OP posts:
Original poster
rocketgirl22 · 15/01/2018 18:58

aero

It is my conclusion as well, and the stress is coming out in other ways (heavy drinking and feeling overwhelmed) I don't know how supportive her dh is to be honest. I have known him for decades and he is not emotionally caring although loves his family.
We are here when she is ready.

OP posts:
DangerMummy · 15/01/2018 19:12

RidingWindhorses - all I was doing is setting context as to why she might be doing this (as someone who may have done the same in the past).

DangerMummy · 15/01/2018 19:15

Rocket - you sound like an excellent friend. Just be there for her. She will talk when she is ready

CorbynsBumFlannel · 15/01/2018 19:19

There are loads of reasons why she may not have told you. She may be in denial, she may have had him assessed and he was found to have traits of asd but not enough to meet the diagnostic criteria, he may be diagnosed and she feels it is his medical information to share if he wishes - not hers.
There are very few people in rl who know about my dcs asd diagnosis. I don't think it's relevant. I don't allow him to cause harm to others so I don't really care what other people's opinions are about how he behaves.
I don't see how knowing whether or not he has a diagnosis precludes you from supporting your friend. You know she struggles with certain aspects of his behaviour whether it's due to asd, another neurological issue or his personality.
I didn't really understand the example about the coffee shop. If a 10 yr old is lying on the floor then the priority for any parent would be to get them up in whatever way they could. It's a hazard and just because my child has asd it doesn't mean I'd leave him lying somewhere he's likely to get scalding drinks spilled on him.

Doubletrouble99 · 15/01/2018 19:20

rocket girl, you sound like an excellent friend to have under these circumstances. I hope you are able to help your friend and steer her in the right direction as if they are still on the waiting list for assessment it doesn't mean that time stands still, behaviours develop and can become more difficult, new ones can surface, especially as a child hits puberty so getting some help and advice even without a diagnosis is really critical. The sooner the better really. By the way your friend can get DLA and other assistance even if they don't have a diagnosis yet. Hugs to your friend.

Notreallyarsed · 15/01/2018 19:23

@rocketgirl22 you don’t need to apologise, honestly. You sound like an ace friend, and godmother and I’m so glad this post has helped.
I know (and knew from the first post) that you weren’t speaking about him negatively, and that your overriding intention was to help your friend and her children. That is really awesome.

EggsonHeads · 15/01/2018 19:29

I think that people are being harsh here. The language you have used is perfectly normal for someone who isn't clued up about SN. I can see what you mean about an elephant in the room-the longer she doesn't say anything the harder it is for her to come out and say it. But honestly, if she doesn't want to talk about it don't make her and don't make any assumptions. It may be autism. Or it may be something else. Or it may be a combination of things. She's clearly decided not to share this with you so please let her keep this private. If you want to be supportive just try to be more sensitive to things that you think she struggles with. For example you mentioned that he sometimes behaved in a challenging manner when you go out. Maybe try to anticipate this. If he seems restless in a cafe suggest going for a walk to the park. You mentioned that he has difficulty with other children. Could you try to encourage your own children to interact with him more?

Notreallyarsed · 15/01/2018 19:29

And YY to DLA, you don’t need a formal diagnosis.

zzzzz · 15/01/2018 19:46

This reply has been deleted

Message withdrawn at poster's request.

Snowysky20009 · 15/01/2018 19:55

rocketgirl22 sorry I've been out, to respond to your question, yes it took four years for my friends ds to be diagnosed (and that's quick compared to some people)

Aeroflotgirl · 15/01/2018 19:57

I think she is just overwhelmed by it all, and grieving for the child she hoped that she would have. It can take years to adjust, she needs support.

paulweller73Murielswedding · 15/01/2018 21:04

Wow zzzz. What a nasty reply to someone who just wants to be a good friend.

zzzzz · 15/01/2018 21:20

This reply has been deleted

Message withdrawn at poster's request.

RidingWindhorses · 15/01/2018 21:46

Well it could equally said that 'the most infuriating alienating and usually utterly pointless thing to do' is to be bitch to someone who is trying to be a good friend on the basis of your own issues.

The comment about google was extraordinarily patronising and unnecessary.

zzzzz · 15/01/2018 22:12

This reply has been deleted

Message withdrawn at poster's request.

RidingWindhorses · 15/01/2018 22:21

I've been sick/disabled since I was 18.

Doubletrouble99 · 15/01/2018 22:27

I am an expert in my own child but I am not an expert in how to help my child zzzzz. When your child has behavioural challenges and they don't react in a neo typical way it's really difficult to know where to turn.
I wouldn't suggest the OP should be googling and giving out advice. I am suggesting she be a shoulder to cry on and be a good sounding board.

RidingWindhorses · 15/01/2018 22:37

I don't get the impression the OP is giving out advice. She's asking for advice here on how best to support her friend.