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.

When my friend talks about him she talks about him as being extremely naughty, defiant and testing her nerves/limits constantly.

It is like she thinks if she put more discipline in place this would change everything, but when I look at him I don't see someone deliberately being naughty. He sometimes hums to drown her out.

She speaks about him as if there is something he can do to change himself, that somehow this is down to him. I am not being critical of her at all, but I just wonder if she does know?

When he was young I thought it was attention seeking as she said and lots of children do it, but now as he is older I don't see it that way at all.

In the meantime I think he is struggling socially and if he is unsupported this must be very difficult for him as well.

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

It's quite common. I have had a very close friend minimise my concerns despite both my DCs having diagnosis's. She was the type that would let her kids do whatever they like and to hell with who they might upset. That people are too soft on their kids these days and was one of those "there's no such thing as ASD/ADHD" people. We pulled right back from them, for my Children's sanity and my own. Fast forward four years and she's obviously had a change of heart as she is now fighting to get a diagnosis for her own youngest DC.

spring

I would have thought that the first requirement of being any kind of friend is to understand each others problems and challenges, and esp ones that concern the dc. They are always the hardest to deal with.

You don't need friends that make life even harder! She might well be very sheepish when the diagnosis arrives and she realises what you have been through.

When my friend talks about him she talks about him as being extremely naughty, defiant and testing her nerves/limits constantly

Does she have a wider friendship group? Maybe she has a couple of toxic friends that are putting these thoughts/ideas into her head. I'm asking because the first time we suspected something was amiss for want of a better word, I had that snapped at me by a 'friend'. "theres nothing wrong with him - you just need to be tougher!".

Your friend needs to be reminded he is not doing it on purpose.

The SN boards on here are a fabulous resource, plenty parents in her situation and some that have 'been there' and can advise on getting help and support. How you'd get her to have a look there though is the million dollar question.

Some geographical areas have good support that's easy to access like SLT and Sensory OT, some areas let you self-refer which makes it so much easier for any parent who is not really sure (or is still in denial) to say something like I'm concerned about my son's behaviour in certain situations, give a brief description and they'll take it from there.

Otherwise it's making an appt with the GP and giving them a list of reasons why you want a referral which is a bit more difficult for a parent who doesn't want or hasn't yet seen enough differences to warrant an assessment.

Schools vary so much. some don't see any problems at all which then can stand in the way of getting help for a child. It's very possible that your friend has asked school for their opinion and because her son is academically able, they "won't see" any problems. Some schools only "see" a child's difficulties if their behaviour is extreme or they are lagging behind their peers academically.

Some children 'mask' which means they hold themselves together at school so school genuinely see nothing untoward, but the effort of doing that can result in meltdowns either on the way home or on reaching home.

It sounds to me as though she or both her and her DH are trying to parent him like an NT child and are clueless as to why it's not working. He's 10, all the platitudes from well-meaning friends and relatives about any concerns will be starting to grate on her shortly because it's patently obvious her or their parenting techniques aren't working and her child is different to theirs in some ways.

Help can be very slow to materialise, some areas take about 2 years from asking professionals to get involved to assessment and diagnosis, she needs to get moving so there are interventions in place for when he goes to secondary school.

spring

No she works extremely long hours (upwards of 70 hrs a week) and so she doesn't have many friends where she lives, and has a network of older friends (like me) whom live further away.
The toxic element might be her parents whom look after ds and are always berating his 'dreadful' behaviour. They are old school and still smack/name call etc and are not having any of it.

My friend spends a lot of time with them as she relies on them so much for childcare, so she doesn't feel she can challenge them very much/or influence the upbringing of ds. Don't get me wrong they love him, but they are old and do not go for all of this new thinking and everything is black or white types. Naughty/nice. Good/bad.

Of course, how she speaks about him with you, and how she manages his behaviour in front of you could be very different to how she deals with him at home. Everyone is so judgemental these days, that it is easy to worry about what people are thinking, and to almost pre-empt their criticisms. I know I do it with my daughter's weight - she's on the chubby side, and I find myself mentioning it to people, so that they know I am aware of it and trying to manage it. They could quite easily get the impression that I am very militant about her weight, but I never mention it in front of her. She has no idea that being overweight is seen to be a 'bad' thing - which was highlighted whether she kept calling one of my friends fat! I still have tried to not portray it as a negative thing, just to emphasise that it is rude to talk about other people's bodies.

She might well be very sheepish when the diagnosis arrives and she realises what you have been through.

Thankyou rocketgirl I have been doing a lot of thinking recently and realising how much I've let some people be less than friends to me and DCs.

Out of the two. My DS is the worst, sorry that sounds awful. He struggles massively socially, but he works best with what I call his 'zen group'. They are the type or people that are that laid back if they leant any further they'd fall over! His friends and his adult peers alike. Its silly stuff as well which you wouldn't even think of. Ee went out for a meal with my best friend recently. As I was trying to get him to keep his butt glued to the chair. My best friend 'here let him stretch his legs and come and sit next to me'. He sat back down the minute he'd done that. That's all he wanted to do. Stretch his legs. (and sit next to the best aunty in the world).

Find out what are his favourite places are and do those. As a pp said before anything which will over stimulate him is bound to start off wobbly.

Hi OP

I have a DS who is currently undergoing assessment for ASD.

There is only one reason that I wouldn't discuss it with someone, and that is if they minimised/downplayed my concerns when I first raised it with them. So a response along the lines of "No way! There's nothing wrong with him surely?! He's just shy/he'll catch up/grow out of it" etc would mean that I didn't discuss it any further with that person.

If I have mentioned it to someone and they were wondering how things were going then I'd be quite happy to talk to them about it. If they asked "How are things going with DS? Did you mention an assessment of some kind?" then I would tell them where we were up to with it. i'd feel touched that they remembered and cared to ask about it.

I may not bring it up spontaneously in conversation, ESPECIALLY if DS was with us. I don't talk about it to other people in front of him, or in front of other DC who might overhear.

If this woman is your good friend then ask about it. She might appreciate the chance to offload a bit (I am finding the assessment process really difficult and would love my best friend to ask how I was getting on).

obscure

We have reached that place now.

He is very academic and bright, and no worries at all on that front, and maybe masking is happening to some degree. Although she has had calls from the school about his behaviour, I am not sure it has necessarily alerted deeper investigation beyond that.

Thank you for the recommendations I will take a look.

Re overstimulation think bright lights, loud noises, lots of colours.

In DSs ASD Assessment. The SALT one was done at school. They had to change rooms halfway through. He kept getting distracted by all the beautiful artwork on the wall by the schoolchildren .

The more you say the more I feel sorry for the boy. He needs support and not to be labelled and punished a lot.
You friend is obviously struggling too.

If I was in your shoes I would see it that to be a good friend and godmother you should find a way to gently raise the issue with her, ask what the situation is with the assessment, steer her towards accepting he may not be NT and how to find support.

As you suggested above, I agree that the best time for this conversation is when it is just the two of you.

Labelled naughty

I guess knowing what to do would be to ask your friend, "what can I do to help you?"

The lying on a floor in a cafe. It's not really acceptable for any 10yo, although the reason(ing) behind it would be different, therefore you'd manage it differently. You'd need to look at why he's doing it and what you can do to prevent it getting to the point that that is his only option for communicating whatever it is he's trying to communicate. Can the trigger be avoided?
Sometimes a change of face, someone else asking could make the difference.
I would hazard a guess that if your friend has got to the point where she can't stop him doing it, that she doesn't know what to do anymore, then she is way beyond breaking point. I've been there, and my default was "it's fine, don't worry, I can manage"

Also agree with areyoufrees statement that friends can and do minimise it. s/he'll grow out of it / you just need to be firmer / why do you pander to it / oh it can't be that bad / oh my dc does that. Etc

Oh and an average of 18mths between referral and diagnosis in my area.

I'm in the same situation with a friend...I'm convinced her dc has autism too.he behaves exactly like mine does,the school have insisted my ds being assessed,but her school don't notice anything,I think she's blocking it out and dosnt want to face it..perhaps op your friend is blocking it out too

Another person here who doesn’t discuss my son’s diagnosis for fear of it being minimised. Also I hate the idea of people using it as gossip fodder.

I confided in my best friend in the initial stages of seeking help and she minimised it, I think in order to reassure me. It was so unhelpful though as we were at the end of our tether trying to cope with challenging behaviour and it felt like she was downplaying that too. We are still very dear friends.

OP you sound like you are a very kind person.

I can only offer my reasons for not telling many people about my sons ASD diagnosis. I haven't even told his grandparents. He's been diagnosed since April 2017, but it was assessments etc for much time before.

I feel so protective of my d's it's hard to give other people this information about him. I'm scared they will pick at his behaviours, I'm so sad that he has been through tests and I'm hurt my son was picked apart until he was behaviours and not a person.

I know when he's old enough to understand he can share this part of him, for now I feel it's very personal and hard to talk about without crying. Your friend may confide in you in time.

Chances are she already knows and is seeking assistance.

We’ve had concerns about my son being potentially ASD for a few years but never really talked about it to other people. Now I have opened up to a few people about it, they’ve said they suspected he might be ASD but didn’t know how to or whether they should raise it with me.

How do you think she’d take it if you mentioned it to him? I honestly wouldn’t have been bothered if the people I knew had mentioned it to me, I already had my own suspicions and maybe your friend is the same.

cheery

I can totally understand you wanting to protect him. It is terrible he was picked apart.
I am sorry it is hurting you so much, but at least you can talk about on here and in confidence and not feel like you could be hurt.

I don't think my friend would ever think we would do that, but maybe it is just too raw at the moment.

I think your idea of going out for a meal with her, just the two of you is a great idea.
I would suggest to her it was a little treat for her. I would ask her about how she is feeling as she sounds so stressed. I would suggest she needs much more self care herself and perhaps she needs to see her G.P. as unfortunately getting stressed with her DS and shouting at him isn't going to help him or her. He needs completely different style of parenting unfortunately. I suffer from secondary trauma due to the high stress levels I have been under whilst parenting our children.
Something called therapeutic parenting is the way to go. Children with ASD can very often be very good academically but no use at all in social situations, be it in the playground or in a restaurant.
I would not suggest loads of web sites or other things we have been suggesting on here at your dinner. I would just suggest that there are such things. I wouldn't want her to think you have been researching behind her back. I am also on a couple of closed face book pages for parents with ASD/ADHD children which are brilliant to give you ideas and make you feel you are not alone.

I would also talk to her about her long working hours and her relationship with her DH. Is there any way she could rethink her working life as everything is obviously getting too much?
If she was able to reduce or change her working hours she may be able to rely much less on her parents who obviously aren't doing the situation any good at all. It must be so difficult for her, she must dreed going to pick him up from them if all she gets is how naughty he has been.

zzzzz

You are entitled to think that, but I don't agree. I have seen my friend struggle so much in the last few months esp, how could I not feel moved to help her in some way? To know what is troubling her, and to be there for her.
Being a good friend might be keeping quiet about my concerns, and I have already decided to follow her lead entirely. I don't think caring is being intrusive, but it depends on the friendship I think. If she were new or causal friend it may be different, but she is like a sister to me.

zzzz - you are talking b.......

The OP is not being nosy she is desperately trying to help her friend who is having major problems which is affecting her stress levels, her marriage and maybe even her work for all we know.

She really needs the OP and her help as she obviously has no one to discuss this with at all.