Awaiting diagnosis for suspected High Functioning ASD for my 15 year old son

Hi Catlover

It's so interesting that you say he used to mask it - you are not the first person to tell me that so I'm beginning to understand.

I desperately want to support him - if this is how he is, then that's fine I absolutely do not care as long as he knows and feels he is supported and understood.  I can manage my own feelings around it.

Because of his intelligence, the school have supported him to attend college 2 afternoons a week and he seems to want to do that.  I think he was skipping certain classes because they weren't stimulating or interesting enough for him and he stopped going to PE I can only assume because of the close contact and changing rooms - although he loved PE the first two years and even picked it for his 3 & 4th year.  They've allowed him to drop PE though, which has helped his attendance rate at school.

The trouble I have is that I don't know when he needs me - he doesn't give me any indications.  He doesn't stim, or certainly not that I've seen and I'm familiar with it.

Two of my partner's children are autistic, one is non-verbal but they seem to be at the complete opposite end of the spectrum to my son.

Thank you so much for your response, it's so helpful and I really appreciate it.

He’s at ‘that’ age. Once they hit high school, everything goes down hill. It’s too hard. Too much stress and expectation. I’m guessing he used to mask to fit in. Now he cannot muster the strength to do it anymore. It’s overwhelming him, and he has shut down. This will be a very difficult time for him. 
Knowing that he’s autistic will eventually bring some sense and realisation to everyone. In turn, he will start to be him, and you won’t expect him to act a certain way. 
It sounds as if he needs some minor adjustments to enable him to stay in school day to day. Does he have hobbies or interested he can keep himself busy with? Does he stim? That might help him manage some of the feelings his is dealing with. 
As a parent, there isn’t much you can do. Just be there when he needs you. Don’t put any pressure on him, but you could try and see what things make him feel better, and what things don’t, so you can start to eliminate stressors for him, which add to the current situation he’s in.

Things will get better. I’ve dealt with it myself (daughter), and I am also autistic.

Hi there

I thought I had replied to your message but I can't seem to see it.

This response is so helpful and you sound like a fantastic young person - I want to thank you so much for replying and you have helped immensely.

It's just me not having a clue how best to help and support my son and I worry I'm doing something wrong.

I can't thank you enough for your advice and I have to say that your parents must be so proud of you!!  I know I would be!

Thank you again, so very much.

Hi - Actually, I wasn't surprised when they mentioned it.  When my son was a toddler, I questioned his behaviours with the nursery, my GP and my Health Visitor but they all said he was fine.  He never threw a tantrum like other kids, there was no kicking, screaming or rolling about the floor.  Instead, he used to just ball his fists up and shake in a rage whilst keeping eye contact and lowering his brow.  It was like he was boiling up inside.  He also had some little things like if he spilled the tiniest drop of juice on his clothes he would want them changed and hated his little brother touching his stuff. He was invited to parties and he would go but he sat by himself and didn't interact with the other little ones - he said that's what he wanted to do.  He didn't really make friends until about Primary 3, around 7yrs old but it was his choice!!

After a while, because he was so intelligent, switched on and making friends, I forgot about how he used to be.  I thought maybe that was just his little way.

It's now coming back to haunt me and I wish I pushed harder.  So whilst I wasn't surprised by the potential diagnosis I felt like I'd let my son down.  I should have advocated for him harder but I just didn't know.

My son doesn't express emotion either - I have no idea if he's happy, sad, scared, content.  It's just a blank canvas and when just two years I had the complete opposite, I can totally understand how you feel.  My son doesn't get abusive or anything - he just ignores everyone.  There are times he's missed school because he refused to get out of bed.

I just discovered last week (from a mum who's daughter is in his class and they used to be friends until he changed and distanced himself from her) that's he's been badly bullied in this class and although there area couple of ring leaders, it's like a pack mentality who were surrounding him.

I think I slept 3 hours on and off that night and could barely open my eyes - they were so puffy and swollen from crying.

I kept him off the next day, phoned the school and was straight in for a meeting.  It's being dealt with but the pain I feel thinking he was shouldering this for months it's almost unbearable.  He says he wasn't scared, it didn't bother him and although he wanted it to stop it was because it was just annoying more than anything else.  Even that upset me.

If I can give you any advice, as this is what I'm trying to do, is to read up about High Functioning ASD and how it can affect those involved, including how they interact with family members.  I sometimes feel my partner is just moaning about him all the time and it just hurts me so much because I know my boy is still in there.  I feel so defensive but then I worry I'm being soft as my partner says some of his behaviour is just being rude.  I disagree - I think it just doesn't occur to him now to say thank you, or speak to someone etc.

I'm always here if you need a chat... I really hope you can start to find some peace soon.  I think I know only too well how you must be feeling right now.

xxx

This is such a helpful response, it's so interesting to hear your insights.  I hope you don't have to wait too long for your assessment, it must be one of the hardest parts, that and whatever the outcome is?  

How did you feel once things were explained to you about a possible autism diagnosis?  Did it help things make a bit more sense and put you more at ease?  I don't know how to go about talking to my son about this, his assessment is in a couple of months.  I want to be honest, but I don't know how much he will understand.

With my son, it's not so much the lack of affection that I struggle with, it's that he can't express how he's feeling.  He gets really frustrated and then so angry that he shouts and is abusive, more with me that his dad.  I have started walking away when this happens, I used to get angry and shout back.  I try not to take it personally but this is quite difficult.  He will apologise once he's calmed down, but I want him to know this isn't an acceptable way of talking to people.  Most of our issues are surrounding schoolwork / homework.

I didn't think it could have been lockdown that made the situation come to light, but it's very well possible.  He quite enjoyed lockdown learning over Zoom.  When he did go back to classroom in September his year group was mixed up and all the boys he used to be friendly with were in a different class.  He struggled to make new connections, except for with one girl who he is close to.  I also think he's had some bullying, which he is reluctant to talk about with me.  

With better understanding from me, we have moved forward a lot, from not liking each other to being much more accepting.  I just want to help him  as much as I can.  

Miss V - I understand what you say about your partner and how he interprets the behaviour as my husband would get very angry and then this would make the situation much worse.  I've tried to explain to him what I'm learning and it's not always easy but he doesn't react the way he used to and tries to be more understanding too.

Wow!! Firstly, thank you so much for your response and you sound like such a mature, articulate 16yr old. I imagine your parents are so proud. 

That all helps and actually,  what you said about interests is resonating, because he did become more "talkative" when we spoke about computers and coding ,  so I guess I better start reading up!

We tried counselling at school and also the school psychologist and CAMHS also offered mental health support but he refused it and doesn't want to engage.  Because of his age, they say they have yo take his wishes into account but I do think he would benefit. 

Again,  thank you so much for your response ,  you have given me a level of comfort.  I was just worried that my son felt unhappy ,  isolated and that tore me apart.  I don't mind who he turns out to be ,  as long as he's happy and safe.  That's all I want for him. 

Thank you, I'll take all your advice on board. 

Hi, I know that it must be hard as a parent to go through all this, but as someone in a very similar position to your son, I might be able to give you some advice?

I'm 16 and waiting for an ASD assessment, covid and lockdown caused me and many other autistic people to change a bit, for many reasons which will vary from person to person, but that's okay! We're still the same people, just expressing ourselves differently or struggling in different areas than we did before.

It's clear you're struggling with your son's lack of affection, my parents struggled as well when I stopped liking physical contact, but its important to remember that autistic people can express affection differently. Have you ever heard of love languages? Physical touch, words of affection, quality time, ect? For me (and many other autistic people), I express affection by sharing my interests and things I like, because these things make me happy, and I want to share that joy! Researching some of your son's interests or asking him questions might help you reconnect with him again Physical touch can be really uncomfortable/ physically painful for some autistic people (this can change through our lives and depend on the person), and while for you a hug might be hugely comforting, it might not be for him.

Think of it this way: at the moment you and your son are trying to communicate in two completely different languages, even if your telling him you love him, it just doesn't translate, but if you adapt to the language he's using, it'll become a lot easier to get through to him.

In regards to your son not expressing emotions, some autistic people just dont. Or we express emotions in other ways, like stimming! I flap my hands and move about when I'm happy, but one of my friends (also autistic) doesn't express emotion is any obvious way- it all depends on the individual, and trying to connect with your son through his interests and encouraging stimming and other neurodivergent ways of communication might help you with that. (If you are able to get him some kind of counselling/therapy that might also ease your worries, but I know this isn't always accessible, and you'd also need to make sure the counsellor can support autistic people- alternatively maybe see if his school/college has some kind of guidance counsellor he can speak to?)

Also maybe look into groups of autistic people, online or in person, for your son to join! I know that I personally really struggle to make friends with allistic (non-autistic) people, and being able to speak to other autistic people really helped me with my mental health and just existing as an autistic person :D

You seem like a great parent who's genuinely trying to connect with your son, and I'm really sorry if any part of this came off as passive aggressive or villainising you- I really struggle with communicating and that was never my intention- I just wanted to give you some advice from the perspective of someone who has experienced the same stuff as your son. I wish you guys all the best! :D

Hi, thanks for your reply.

I suppose really after he turned 13 and then of course we hit lockdown. He was fine most of 2020, so I didn't see any warning but around Chris 2020 was when it really started and it's been a downhill slop from there. 

I'm so sorry you're going through the same. It just makes you feel so helpless. 

Hi Miss V,  sorry to hear things are so difficult for you right now.  It's great that you're on the waiting list for a consultation / assessment  but this must feel like a very long wait with what your son, you and your whole family are going through right now.  

Did the change in behaviour coincide with a change of school or another significant event?

We have had a similar situation over the past year especially with my son who is 10 years old.