Friends son and possible autism

[Dramaalpacas]

i have been friends with another mum since our boys were born. They are 4 now and have just started school. Since he was 2, I had an idea her son might have autism (tiptoe walking, hand flapping, stimming, obsession with trains, lack of eye contact). Now he is 4 it is even more obvious (toileting issues, only likes to play by himself, can talk in great detail about his obsessions but not interested in a conversation, will not listen, is always on the move, gets very overwhelmed if anything is loud etc).

I have never said anything to friend and she has never mentioned it. Now the school have expressed concerns for him and want to send him for assessment and she is absolutely knocked for six. She really didn’t see it at all and is very emotional and worried. Everything he does, she asks ‘do you think that’s a sign’ and I really don’t know what to say because ‘yes, that’s a clear sign that he has autism’ doesn’t seem helpful or kind when she’s in this state but neither do the platitudes others are giving her like ‘oh no, I’m sure he’s fine- didn’t his dad do the same thing when he was young?’.

any with experience of being in this situation I would really appreciate some advice on the best things to say to her.

She is going through a form of grief. I was an absolute wreck when my DS's nursery told me they thought he was on the spectrum. Suddenly all the hopes and dreams I had for my little boy were thrown into uncertainty. For ages I didn't want it to be true and was in total denial. Please just be there for her. Tell her that you don't know if they are signs of autism (even if you think they are - let the experts decide) but stress that you will be there for her no matter what and that it doesn't matter if he is on the spectrum as he is still and always will be her wonderful little boy. A lot of my 'friends' alienated me which was bloody awful. I know DS's behaviour at the time was different to his peers so that would have played a major part in it but it resulted in a horrendously lonely time for me.

I've had the same situation with more than one friend. All you can do is be there for her. The fact that you knew all along is irrelevant. Feign ignorance and respond to her emotion

It sounds strange this wasn't flagged up earlier by childminder/nursery health visitors etc. I think I would just stick to saying that if he may be wired a bit differently and/or need a little extra support at school, it is good that this is being explored.

You just say. ‘They’ will work out if he is and that will help everyone understand and support him as he grows and either way we will all love and care for him just the same.

I think I would respond "Hmmm, I don't know, but if school have spotted something they have a concern about then it is worth following up and having the assessment just in case". Be there and be supportive, but gently encourage she gets the assessment done without giving your opinion of the liklihood he has ASD.
It is hard OP, I have a friend whose DC clearly has additional needs. She said she suspects as much on one occasion earlier this year and we had a really good chat about it (the signs have been there for a long long time). She had made up her mind to speak to school about it, as school's feedback so far is that he's a bit naughty (I'm paraphrasing, they didn't use that word!) and a bit behind with learning, but not enough to trigger anything yet. He saves the violent meltdowns for home. I asked her a few weeks ago how it was going and what school's response was. She replied "well school still haven't brought it up, so I'm not going to. If they aren't worried, then I'm going to assume everything's fine!". Meanwhile, she is being treated like a human punchbag at home ☹️ I'm not going to say any more to her now, as she's made her position clear, but I will be there to listen instead as hard as that is.

Do you think she's asking you these questions because she wants reassurance that her DS is not autistic or because she's genuinely hoping for someone to take a look at him and see what the school are seeing?

It's very hard, because the right support in this instance may not be reassurance in the classic sense.

You can just be honest. Mention the traits you have noticed and say you have heard these can be associated with autism - but obviously you aren’t able to say they are, but you had noticed them.

It is not being a good friend to minimise things. It sounds like there is a real chance her DS will eventually be diagnosed, and she will need to be able to accept and learn as much as she can so that she can support his needs and adapt the environment for him when necessary, and so that she can understand more for herself.

Everyone flapping about with “Don’t be silly, nothing to worry about!” makes it seem as if the alternative is unthinkable.

It really isn’t. There are lots of neurodivergent DC and adults about. I don’t know quite how to articulate this, but maybe realising how ‘normal’ it really is, and taking a much more matter of fact approach to the situation- “Yes, he might well be autistic. Now what ?” then looking at strategies to support (and by this I mean support when it is in her DS’s best interests, not change or camouflage autistic behaviours) could be what is truly supportive for both of them.

The sensory side could be a good side to look at, with it without a diagnosis. Her DS struggles with noise, would he like to try ear defenders? Practical support and ideas are what I think I am trying to suggest, without beating around the bush.

Just be supportive. Reassure her that the school are very in the ball to have spotted possible signs and flag it up. I'd aybe encourage her to speak to the chool sendo about what additional support he might need and how they are addressing that. One thing I would say though is that the wait for assessment is LONG. 2 years or longer even in some areas. So in a sense it's irrelevant whether he is autistic or not, what matters is that he is getting the correct support in school, so I would encourage your friend to focus on this in your shoes. I would keep quiet about your long held suspicions - you didn't speak up at the time so to tell her now would be upsetting for her I think. That being said, if she mentions behaviours that you've noticed I would say, yes, now you mention it he does do that doesn't he? So not minimising her feelings, but not adding to her guilt for not noticing herself earlier iyswim.

I have a child with special needs. I think it’s very important to reiterate to her that any diagnosis will not change her son. He will still be the same beloved little boy that she has loved and cared for, but she might have some extra information which can help her and the other adults in his life to support him. Unless you are a doctor or an ed psych you can quite legitimately answer that you don’t know if individual behaviours are signs of autism, but you can also gently remind her that autism is a complex diagnosis which requires a holistic assessment.

Remember too that current thinking on autism suspects a strong genetic link. She or her partner may be on the spectrum, or have family members who are, and this will affect both how she processes the information and what behaviours may seem typical to her, based on her own upbringing.

I have a very good friend that refused to get her dd tested despite the fact she is now 14 years old and could have had so much support and help in her life.

This was denied to her due to the stigma my friend believed was attached to her dd and potential ASD, in her culture it is quite stigmatised, but she ignored her behaviour and just labelled her naughty as a toddler and has done ever since. I found it so hard to balance my honest opinion when asked, and what was right for the child versus respecting my friend's decision and wishes. I stopped seeing them for a while because her dd's behaviour was so bad, she was violent towards my children.

Now her dd is older she has gone off the rails. No one can reach her. Something in her has switched off, and shut down and she does dangerous things.

I wish I had found the courage to have more of a conversation with my friend about her dd when she was little, and what could be done to support her, rather than accepting my friend's wishes meekly.

Real friends sometimes have very hard and sticky conversations, and tell the truth when no one else will dare, gently and honestly. You can't force your friend to do the right thing, but you could point out how much easier it will be for her child if he has the right support, help and framework in place with adults that are well informed and understanding of his condition. The confusion that surrounds undiagnosed conditions can create anxiety, self harming, eating disorders and intense mental health conditions later in life.

Do it for the child, if not for your friend. It could make all the difference to the child's life. That is my experience. Nearly fifteen years of managing a very similar situation.

Be gentle, tell her you're not the expert but it could be a sign, encourage her to get the tests so that whatever the outcome she knows what she is dealing with... You sound like a very caring friend.

Keep the focus of the conversation on neuro diversity and not Autism. There's a very real grief process for many parents at this stage when ASD is mentioned as it's very frightening and misunderstood. Compliment her child's articulate chats about his interests and big up how great it is that as a family they are being supported. National Autistic Society have a brilliant site. She's not yet at the stage where she can process what it means for his future and needs reassurance he is still her little boy. As a previous poster mentioned it's very likely herself and, or DP are ASD.

Just listen and no judgement.....

Also, lots of children who have ASD have a lot of other conditions associated with it (adhd - which can be medicated) , SPD so it's probably not just ASD.

Sounds great the school are trying to help.

If the child struggles at school the mum needs to take action quickly to get a EHCP (she can do it herself) because they take forever.

You sound like a lovely friend 🥰

I get it I mean I get her how she is being this was and not facing up to it. My son diagnosed when he was 18 and yes some had said to me they wondered if there were problems with him due to his language being late to develop etc but I at time totally ignored it because quite simply I thought he was perfect and it was my first child. Tbh it's a tricky one as diagnosing can be an absolute tornado bomb shock I mean.think horror and times that by infinity for some it's very difficult and some might argue that if she wants not to deal with it then maybe she shouldn't and the same applies to the child.it took my son about 5 yrs untill he actually began to discuss autism and owning up to me n himself that he had it and I being honest here as what a lot don't realise is the serious implications of the whole diagnosis thing..in fact it distressed my son so much he tried to commit suicide...so he was diagnosed by the NHS at 18 which was far to late he and I were offered no counselling and I had no family or husband to help and we had just moved so hadn't any friends at the place either.. so what I am saying is a cautionary tale to make people realise that diagnosing is not always good and that you should respect your friend and her decision maybe on some level she knows something is wrong but doesn't know what help she should be seeking and that's just a loose cannon the child needs the person who is leading them to get help to be solid in themselves otherwise is blind leading the blind. I would suggest that you do voice your theory's to her about child's possible autism but if she doesn't bite then leave it alone..and is she does bite then at least point he in direction of qualified professional who deals with helping parent of autistic children.

Thanks everyone. Of course I will never say that I suspected all along but you have given me some ideas of how I can gently agree with her and help her talk through options. Of course she’s still in the stage where she hopes the issues will go away with a little extra support from the school. I’m not sure if she knows much about an EHCP but if anyone has some tips on how to get the ball rolling with that it seems like that might be good advice to give her a little further down the road.

I've been in this position a few times when friends/ family have come to me for advice (I assess ASD as part of my job). It's important not to minimise it, but also you're not an expert so I'd saying something asking the lines of 'x is still so young and developing. x behaviour may or may not a symptom if autism. If you're concerned why don't you take a note of it so you can discuss it with a professional during the assessment'.

I would just tread carefully as I said because a diagnosis can have HUGE repercussions on parent AND child its massive and it does not allways have a happy ending ..that you as a non professional may not even be aware of. Tbh I would even visit your doctor and say that you think your friends son is poss autistic but don't know what to do as they may be able to advise..its just tread carefully because a diagnosis and everything that goes with it in some.ways is bigger than the problem itself.

Can you give some examples of the diagnosis and “everything that goes with it” being bigger than ‘the problem’ itself?

Well autism is a big problem in all seriousness ie for example there is a high suicide rate and more so in girls than boys or weomen rather than men..so that's the gravity of the situation I'm trying to get across. So handling autism and diagnosis etc needs to be handled with extreme caution its a very delicate thing...I mean I'm a mother to my son who's autistic and even I was blindsided and it was handled all wrong and as I said my son became suicidal because the outside forces where not dealing with it properly. So I am saying that at the moment ignorance is bliss if you like even aside from all the problems they may be having due to autism there is also stability in not knowing..right so at the moment as far as they bothe concerned nothing is different so the child may have certain friends or do certain activity and there may be a level of normalcy and human contact that the child is having in their life..when you change that and child is diagnosed you can sometimes find and yes it does happen..that the child's friends may not want to play with him or the mother or said child may feel they don't want there child to play with them etc or they may start to treat the child that has autism.difderently..the child may seek to find out about there diagnosis on line for example and come across much negative things about it..you know so it does and yes we do still live in a world like thus where people suddenly don't want to know you..also family relatives can suddenly not want to know as they have to look into their own gene pool and at themselves and question if they have autism..so u see it can have MASSIVE repercussions rippling out far further than you realise. I'm not saying don't try to help her or her child ..I'm just saying tread VERY VERY carefully it is wise advice from someone who has been there and done it..so go easy and mostly get professionals in to deal with it where you can and make sure they hood ones too..as.thus is something that IMHO actually needs family counselling also.

Sorry typo meant good one not one from the hood lol

I had a similar situation with a friend.

I listened, and advised her to follow the schools advice about seeking an assessment, and to do a bit of reading up about ASD herself. I said that IMO if her DS did have ASD then a diagnosis would beneficial. That even he didn’t have ASD, then having had the assessment could still help her and the school with supporting her DS if there were any needs identified, or at the least it’d stop her worrying about ASD. And I also mentioned how long the assessment process can take.

Although ultimately my friend decided not to seek an assessment as she and her DH felt it would be unhelpful to try and label their DS. It’s not an opinion I agree with but it’s clear that she’s not ready to consider the possibility of ASD, so I’m keeping out of it now.

I’m sorry to hear that you had that reaction from family @Mupett, that sounds really hard.

Speaking as someone who had a late, adult ASD diagnosis and who has a child with a recent diagnosis, I really think an earlier diagnosis - and giving the child the opportunity to understand and learn about being autistic - is a brilliant thing.

We all have different experiences though and it sounds like yours was affected by lack of support and understanding after the diagnosis, rather than the diagnosis itself being the problem.

I’m really sorry that you have had such a difficult time, @Mupett. I find it helpful to come back to the fact that diagnosis doesn’t change the child. The child is the same person before and after diagnosis, with the same needs.

Do you have a link to research that shows the increased suicide rate is due to having a diagnosis and not due to the needs that result in the diagnosis? Because the later are still present even when not diagnosed.

No-one is forced to disclose their diagnosis to friends, or family for that matter.

OP, IPSEA and SOSSEN have lots of helpful information on their website about EHCPs, in.cueing model letter you can use to request an EHCNA. The SEN and SN boards on here are helpful too.