Worried about friend's kid

[Comfortable8520]

I am not quite sure where to start with this.

There was a recent thread about a mum who was struggling to take her 9 year old out at weekends, and a lot of replies suggested the child could be autistic. What really struck me was how many people said their children were diagnosed later on at 7, 8, 9, even into the teens. Some adults said they were only diagnosed in their 30s or later.

I have always been watching my own DS closely. I do not see any signs with him, but I always was anxious about missing something. More than that, it brought up worries I have had for a long time about my friend’s son, who is 5 and a bit, the same age as my DS.

My friend also really struggles to get her DS out for playdates, parties, park etc. It is very unpredictable and often he just refuses to go. That is something I never really understood, as my DS is always keen to join in when we go out. Her son also does not really play with my DS or chat to him, apart from when they play with trains. He is extremely interested in spinning things like wheels, mechanisms, washing machines and similar. I have seen him playing with unusual things like a door, opening and closing it repeatedly.

He seems to prefer being on his own and does not appear bothered about joining others. He also has quite a few sensitivities. He cannot tolerate being touched by other people and will scream, and he struggles to be outside in the sun without sunglasses. He is also a very picky eater with a very limited range of plain foods he will accept. I may be wrong, but communication sometimes feels a bit difficult too.

If this were my own child, I think I would be quite concerned if they had no interest in friends or could not cope with parties or children’s activities. I also worry about my friend herself, as it feels like all of this has taken a toll on her and at times it seems she is close to giving up on having a social life altogether.

I have not seen her very much in the last year as I had a baby and life has been busy. When we did speak, she said her son was doing well at school and that the teachers had not raised any concerns. That reassured me at the time, as I assumed that if something were off, school would notice it.

After reading that recent thread about the 9 year old though, I was shocked by how late autism can sometimes be picked up. It made me start worrying all over again about my friend’s son and whether I should have been more direct with her. I have tried to raise my concerns very gently in the past, but she always brushed it off.

I am now unsure what to do. Part of me thinks I should leave it and stop overthinking, and accept that this is not really my place. I do not want to risk losing a friend, but at the same time I cannot ignore that I sometimes feel uneasy when I am around her and her son. I would love to support her, but have no idea how and whether it would even be welcome.

How would you handle this without damaging the friendship or overstepping? Is this something I should step back from emotionally and accept as it is?

I am in exactly the same position. I have always believed my friends son in autistic. From a young age he was very flappy and excitable. Walked on tip toes and was always in a dream world. Over the years he has changed and the symptoms have grown. If we were to go to gift play and he got hot he wouldn’t take his top off to cool down. Or have a drink his mum would have to remind him. He actually seems away with the fairies a lot of the time. You have to say his name at least 5 times to get his attention. He looks at you blankly if you give him a choice of something like he cannot process what you are asking him. He cannot follow more than one instruction at a time and he is very descriptive and talks very proper. He does not make friends or join in. He started secondary school a year ago and does not have any friends. There are a number of other tendencies as well. I did mention to her once when she was moaning that it might be worth speaking to a dr or teacher and she said that the teachers thought he might have issues when he was younger but it never went anywhere. He also does not seem to have any emotions. A family member close to him died recently and he just struggled when told and carried on as normal. Even as a child he seems emotionless. I myself do not understand this to be honest. If I thought my child had some issues I would be following up but she never did. My friend and her husband have not been around children before they have no sibling or nieces and nephews so I believe they do not notice the quirky way of their son. I myself have a nephew and friends with autistic children so I am quite aware of the traits. I feel like I am stuck as the son really needs help but it’s hard to mention to a friend that you think there son may have issues. If he got help I would imagine that some processes could be put in place to help him and my friend. She recently split from her husband and the child has had no response to it. He hasn’t cried or even mentioned the fact his dad is no longer there.

I just don't know what "help" or "processes" people think exist! I mean yes it can be helpful to seek assessment and a diagnosis but it generally requires thousands of pounds of your own money and/or huge amounts of time and advocacy as does any actually helpful help. I mean just have a glance at any newspaper website if you think there are professionals queuing up to help you.

help

The majority of support is based on needs, not diagnosis.

Help & processes as in to maybe make life easier for him & the parents. If he is diagnosed then the teachers would know why he doesn’t pay attention or why it takes him so long to get to class or why he cannot each lunch in the 45 minutes given. I can imagine life is going to be very hard for him when he is an adult. If he can’t even make a friend how will he join a work force or talk to people in shops. Being diagnosed will “help” he could go to a centre where he gets help
in social aspects like my nephew does. It doesn’t cost thousands either. My nephew was diagnosed and it didn’t cost the parents a penny

@hipbunny what help and processes? The vast majority of support is based on needs, not diagnosis. And a diagnosis doesn’t automatically result in help either. Support and adjustments, including for social communication and interaction, can be put in place now. They don’t require a diagnosis.

If he is diagnosed then the teachers would know why he doesn’t pay attention or why it takes him so long to get to class or why he cannot each lunch in the 45 minutes given.

Teachers can do this now. They can understand the child has SEN and make SEN support. Neither requires a diagnosis.

Your nephew/his parents were lucky, @hipbunny! Don't assume whatever services they benefitted from are available everywhere.

Do you know for sure your friend hasn't sought help and been rebuffed? Most of us have, repeatedly, and it's tough if the school says they don't see anything.

He has totally slipped under the radar at school. It’s never been picked up on apart from when they first mentioned it in reception. I personally would have followed this up but my friend said “well they must have tested him and didn’t mention it”. She literally knows nothing about asd. Like I said she has never been around children before. The school he is in now is a troubled school and unfortunately the kids that shout the loudest and cause problems get heard. It’s well know in the area and this boy is hardly noticed. In fact they even said that at open evening. “We don’t know he is here most of the time”

@hipbunny having a diagnosis won’t suddenly make a school who is poor at providing SEN support suddenly good. You describe a problem with SEN support, not being undiagnosed.

I don’t know that they are poor on sen support in general I just know that they haven’t picked up on his needs as they have not been brought to the attention of the school. He is such a quiet boy and just slips into the background and goes unnoticed.

@hipbunny of course their SEN support is poor if “He has totally slipped under the radar at school. It’s never been picked up on apart from when they first mentioned it in reception…The school he is in now is a troubled school and unfortunately the kids that shout the loudest and cause problems get heard. It’s well know in the area and this boy is hardly noticed.“ and “they haven’t picked up on his needs” is true.

The child’s needs shouldn’t have to be brought to the attention of the school. If they are as you say they are, the school should be picking up on the DC’s SEN. The fact they haven’t is poor.

He seems to prefer being on his own and does not appear bothered about joining others. He also has quite a few sensitivities. He cannot tolerate being touched by other people and will scream, and he struggles to be outside in the sun without sunglasses. He is also a very picky eater with a very limited range of plain foods he will accept. I may be wrong, but communication sometimes feels a bit difficult too.

But these can also just be his traits without him reaching a level of impairment that warrants an autism diagnosis. His school are not concerned and his mum is not concerned, you don't need to armchair diagnose.

There is a massive range of what is normal in young children. Lots love wheels and play repetitively, lots of boys especially don't play particularly socially until they are older. Picky eaters are extremely common, as are kids who don't like when its bright out. Kids have heightened sensitivities to a lot of things from tastes, to smells and touch.

If he's a happy child and his mum isn't concerned about his behaviour at home he's probably just an introverted kid.

@hipbunny thank you for sharing your experience!

@Peridoteage well his mum is often not able to get out of the house to see a friend (because her DS refuses to), go for a birthday party or a playdate. He does not have any friends (although he says he wants to play with children - from what his mum says...) I don't know anyone else with such issues so to me all of it stands out from an average kid.

I had the same opinion as you about the schools. I strongly believed that they are professionals and will spot SEN kids. However, hearing what other parents / adults with autism say I realised this is not the case. A lot of schools do not bother with kids who don't act out or disrupt the class. If parents don't step in things can be missed for years...

I don't know much about the existing help or processes from the govt, but I do think that when my friend pushed her kid to act "as normal" on playdates - that was probably wrong, as it led to his distress. So even educating yourself and your friends about it is helpful.

I also forgot to mention that I saw some awkward moments with her DS's grandparents asking why the kid behaves this way, commenting that it's wrong etc... Surely such comments from family would hurt a parent/child? If he was diagnosed then as a minimum she would be able to explain them what's going on!

Nobody needs a diagnosis to be treated well. If grandparents are being unkind a diagnosis won’t act as some kind of magic shield. It won’t qualify you for support, understanding or benefits of any kind. This is a fundamental misunderstanding that many people have. Diagnosis is helpful because it offers prognosis and allows you to make informed choices about treatment. It provides some legal protection in the form of rights should the individual be discriminated against.

What it doesn’t do is fix anyone or anything you have described @Comfortable8520 or @hipbunny
The one glaringly obvious benefit is that it stops the endless conversations about it with well meaning but ignorant people. I’m not sure I’d dx for that though.

Well I assume the GParents are commenting on it because they think my friend brought up her son in a wrong way, spoiled him etc... If it's correct that his is autistic and has a formal diagnosis then at least they would have to learn more about autism, adjust their expectations etc. I know there are people who don't regard ND and think that ND kids do things on purpose but I hope that's not the majority of the society.

at least they would have to learn more about autism, adjust their expectations

A diagnosis isn’t required for them to do this. Sadly, even with a diagnosis, some extended families don’t and are just as judgemental and opinionated.

The diagnosis isn't required I think if they already strongly believe the kid has autism. But what if they don't suspect it or stuck in limbo of not knowing? Is it not good to have some certainty? What else, if not diagnosis, would give them that certainty?

Of course as you say it's not guaranteed they will accept it but surely a formal diagnosis holds more weight than someone's words or speculations?

Is it because of the mental health stigma the diagnosis is not liked on this thread (although I know ASD is not mental health issue)? Say, if I had regular headaches it could be anything (migraines, tooth, etc) should I not be encouraged to go to a GP and get to the bottom of it? Even if it's not something that can be cured, as migraines, it's still good to know what's going on, no?

I think diagnosis is important, but not for the reasons you are saying.

You parent/grandparent the child in front of you. You make adjustments to their needs and what they require. Even if they had a diagnosis, DC need parenting in different ways. Not all autistic DC need the same adjustments.

No, for many a diagnosis does not hold more weight.

I don’t think it is a case of the diagnosis not being linked on this thread. Many of us have DC diagnosed. It is that you are overstepping. A good friend wouldn’t continue to raise a physical health problem when they had been repeatedly brushed off.

Most of the people responding to your thread have children or are themselves diagnosed with autism or similar conditions. Surely you aren’t so blinkered in your pursuit of your goal that you dismiss all the responses as people not liking a “stigma” you feel might be attached to this particular neuro developmental disorder (not MH)?

Why can’t you let this go? The more you post the more entrenched you become in your preferred parenting choices for your friend. Interestingly the most driven pro-diagnosis you must get him tested person in my journey with my own child not only ended up having her own children diagnosed but is now diagnosed herself. I believe it is called “projecting”??? Do you have concerns about your own child? (I’m asking genuinely not trying to upset).

My child is diagnosed with both ASD and ADHD and it's made no difference to how her grandparents treat her, because they were perfectly nice to her in the first place. I imagine in the wrong hands it could be a stick to beat your adult DC with, though.

"Oh you've got him one of those trendy diagnoses".

"Oh so you're one of the people making the councils bankrupt".

Depending on what paper they read.

I am surprised you think that diagnosis does not hold more weight. A few people here also seem to imply that it gives very little. How is it possible, that diagnosing such an major condition as autism, is not important? Just putting myself in my friend's shoes - I would do anything, pay any amount of money to find out if my DS has autism or not (if suspected). This is the reason I think my friend and her family don't suspect it.

And I don't think I am overstepping at all. I asked if she saw a GP a couple of times AFTER her own complaints and comments. As previously mentioned she said - no, it's just his personality. It's possible that she lied and decided to hide her suspicions about autism but it's also possible that she has a blind spot and does not have any! As I mentoned her family thinks it's her who does something wrong so don't think anyone raised any direct concerns with her.

How is it possible, that diagnosing such a major condition as autism, is not important?

You are putting words in my mouth. I did not say ^this. In fact, I said the exact opposite. I specially said “I think diagnosis is important, but not for the reasons you are saying.” Please read my posts more carefully before saying I have said something I haven’t.

As I said, for many, diagnosis doesn’t hold more weight. They parent/grandparent the child in front of them. They adjust how they interact and support they provide based on the child’s needs, not whether they have a diagnosis or not. To not do so is poor parenting/grandparenting.

You are overstepping, IMO.

If I had any concerns about my DS (or if anyone raised valid concerns about him) I would seek an assessment asap and pay any sort of money for it. It would eat me alive to think that my DS might have ASD and I don't know anything about it and don't do any possible steps to improve his life. And I would rather do it in advance than wait, even if he would not need any help.

Ok, so the conversation went like this:

• My DS (does not care about anyone/play with other kids/seems to be very difficult etc etc)
• Do you have any concerns about it? Is it worth having a chat with a GP?
• No, not at all. He is just like this /it's his personality.

The end of the conversation.

In this conversation - I am overstepping in your opinion?

What was I supposed to say if I suspect he has autism?

What would you say, if you thought your friend does not know?..