Does anyone else's child have these traits (poss PDA / asperger's)

[nanbread]

We are on waiting list for assessment but given we still have so long to wait I wondered if this resonated with anyone.

I think my son has some autistic (?) traits but also some others I don't think are explained by autism and maybe it's something else going on.

The main things I haven't come across anywhere else are:

Almost daily, DS shouts really angrily at us out of the blue, generally at certain trigger points during the day. To give an example he might shout "GET ME MY DRINK, NOW!". But he is then able to regulate at our request so we might reply, "do you want to try again" or "I'd like you to ask me without shouting" and he will ask nicely (although often still a bit upset).

The other thing is that at his childminders age 1-3 who he really liked and trusted, he apparently never displayed any of the behaviours I see now and nursery had no concerns. He played nicely, followed instructions from childminder and didn't have meltdowns with her. He would have HUUGE meltdowns daily with me at the same time in his life. Eg getting in the buggy - fine for her, nightmare for me. He often had huge sensory issues with clothes but when she got him changed he seemed ok?! Real Jekyll and Hyde type differences.

Surely a 3 year old doesn't mask?! What could explain this?

Talking of the sensory issues with clothes, this seems to have mostly disappeared since he turned 4 and will now wear things like jeans and almost any socks. Can this happen? Or was he putting it on the whole time?!

His other traits for reference:

• has no friends to speak of (partly caused by covid)

• can be rigid in his thinking sometimes - eg thinks he can't make friends now as it's "too late"

• doesn't seem to listen or respond to his name most of the time, sometimes he will respond but 10-15 seconds later, he will talk to you without looking to see if you're listening

• is behind at school, struggling with following instructions, says he hates it, but as far as I know is reasonably behaved there

• Plays in an unusual way - he tries to do creative play or role play but it's like he doesn't know how to do it really, eg he'll play with Duplo but talk about different "levels" likes he's on a computer game, the games don't make ANY sense to me at all, or will want to pretend to be eg a cat, but won't do anything else except maybe go on all fours. Plays with same few toys a lot.

• Wants a "do over" if something doesn't go the way he planned or wanted eg he will want to start the day again or go home

• slightly obsessed with me

• Won't engage in almost any home learning or most activities I suggest despite my efforts to make it fun, if he does join in he has to do it his way, however if I get an activity out and he notices it he might join in of his own accord.

• Won't do things he's asked to do eg tidy toys, get dressed, put shoes on, get ready for bed, come to the table for dinner, 90% of the time

• will lose his temper REALLY quickly over little things, no predicting what, very emotional, poor regulation, speaks to us angrily, makes threats, often blames us for things that are his fault / no one's fault eg if he falls over and hurts his knee.

• a few physical issues I won't go into

But when he's not having a tantrum he's very sweet, eye contact ok, speech very good, seems bright, can be empathetic and affectionate, asks questions, can play nicely with other children and have fun with them. On a "good" day his poor social skills, emotional regulation and unusual play are imperceptible.

Hi Nanbread some of this resonates with me and I echo your wondering if there is something more/other than "simple" ASC (although the idea of "simple" ASC is silly!)

My DS is 6 and dx ASC. My DD is now 3.5 and we've had concerns since age 18m. She is due to be assessed for ASC. We think possibly she may have a demand avoidant profile which is why she looks so different to DS (and obviously, she's a girl which makes autism look v different).

DD also has huge clothing triggers at home but seems to be able to cope at nursery.

She also hugely resists the buggy.

She finds instructions on small things v difficult and can often turn into a standoff eg brushing teeth, siting at table, leaving the house.

Through reading we see now that these resistances may be due to high anxiety, but our experience is that it doesn't "look" anything like we expect anxiety to (or how it looks in DS who is also highly anxious).

Sadly, I utterly believe a 3 yo can mask, and have literally watched my DD over the past year become increasingly proficient at this. It grieves me to see it and I'm trying hard to remember how much she is coping with when it splashes out in a meltdown the minute a social interaction is over (even though she says she wants social interactions and seems to be enjoying the company etc).

The things which have most helped us so far have been:

PDA strategies eg always offer choice, choice, choice with every tiny thing.

Making her laugh helps massively; when she resists putting socks on, we do a pantomime of putting the socks on her hands, her ears, wondering why they're not fitting, hmm where do these go, until she's laughing and holding her feet up to put the socks on.

Making things talk to her if things are escalating eg the bar of soap comes to life and begs her to wash her hands so the soap can get a cuddle from her hands.

Having both DH and I present before and after school / nursery so we can do 1:1 with each child. DD needs loads of extra time and space and the stress of trying to get both her and DS out the door on my own was massive. DH has changed job so he can do school hours.

We've timetabled in decompression time so DD is just with us and can take the mask off (i don't think she has a choice or masks consciously but I do think she's most her true self with just us behind closed doors).

If I'm really honest, we're very tired and hanging on for something to shift. Using all these strategies definitely helps but it takes a big toll on us. I don't work anymore and can't see I'll be able to in the short term
Although I hope to in the longer run. DH has changed jobs and may have to
Make further changes as we now realize we need both of us present during half terms etc.

But ..., DD is gorgeous and amazing and full of life. She's wonderful!

@StarNights thank you so much for replying. I empathize with the tiredness and hanging on by a thread. Really interesting to say what you did about it not looking like anxiety, it doesn't with my son either which made me doubt the possibility of PDA.

It's sad to think they are masking from such a young age, isn't it.

My DH's job means I did most school/ nursery runs solo so the "stay at home" thing has helped us a lot with that, less so in trying to enable friendships.

We offer choice but quite often we just get literally no response. Not sure where we go from there!

What do you do for decompression? My son mostly just wants to watch TV (the same episodes of the same shows again and again...)

I don't know if it's any solace but my son is in many ways much easier than he was at 3, mostly as the extremely long meltdowns have shortened (but every child is different).

That's great that you are already looking at assessment for her at such a young age.

Every child with autism has many traits but not all autistic kids present with every trait. There's nothing on your list that I'd say is definitively not neurodiverse behaviour.

Take that list and add any other behaviours that you feel are different to his peers and give a copy to every professional who is involved in his assessment process.

Not sure if you've already been down the hearing check pathway, but a child who doesn't hear properly cannot follow instructions and work out what they are supposed to do, so if that's not yet been ruled out, please see your GP and ask for hearing test asap.

Do read up on autism and its presentations, you seem surprised that behaviour is different in different settings whereas it's very common, home is where a child can relax and be themselves without the strain of having to fit in and conform.

Won't do things he's asked to do eg tidy toys, get dressed, put shoes on, get ready for bed, come to the table for dinner, 90% of the time
again, very common, look up transitions.

Learn how to modify your instructions around these transitions with now, next and then commentary so your child knows what's happening all the time and then expects the change in activity to happen, which in turn will make it easier for him to deal with.

Ask school to drastically simplify instructions for him. Ask to see the SENCO and ask her to observe him and note his difficulties in the classroom and in the playground, unless that's already been done as part of the referral process. If it has, ask for specific help for him with instructions.

On a "good" day his poor social skills, emotional regulation and unusual play are imperceptible
Yes, again, this is common. What you are seeing at those times is your child who is not overwhelmed with the triggers that generate all the other more noticeable behaviour.

Thanks BlankTimes some good advice.

The school have already made some changes but I will speak to them about simplifying instructions and now / next.

Yes we have ruled out hearing issues.

Funnily enough after I wrote my post I found a diary note I had made from 2 years ago about how he presented differently at home than elsewhere and had noted from my reading that was common with ASC but it seems I had forgotten that in the meantime!

I think also, because he seemed so comfortable with his childminder, I would have expected him to feel like he could be himself in front of her. But maybe not...

Also he followed instructions for her, and at nursery, but doesn't so much at school. I'm not sure what's changed. I think he struggles with the number of children in the class. Maybe more demands placed on him too - his nursery was quite easygoing.

Hi @nanbread that's good to hear that things with your DS got easier beyond age 3, gives me hope, thank you!

I know what you mean about the WFH shift meaning your DH is around more to help, it really does help I find having two of us. DH has to be in the workplace for his job and it was during lockdown 1 trying to cope with both kids on my own at home that our concerns about DD moved from vague feelings of concern to more specific red flags about safety and behaviour. By the summer I wasn't coping anymore and DH took a demotion at work so he could work shorter hours and be around more. It was definitely the right choice for us coping as a family, but it stings.

Re decompression - yes we similarly use screen time for DS who watches his special interest programmes on repeat. And we use iPad time for DD too. DD also needs chunks of time cocooned on her own ie with head under a blanket or she stops using her usual language and instead makes baby noises and then she likes to sit on my lap with her head hidden up my jumper. So I think there's a theme of covering her head to zone out a bit. Often a chewy toy that she sucks like a dummy helps too. And when we're in company we whisk her away for some solo space when we see her disengaging and looking for an out.

Do you have another child with ASC too?

No my older child isn't autistic to my knowledge BUT he does have some signs of neurodiversity eg some speech issues, some social communication issues, anxiety, dyslexia, memory and executive function issues. At one point we suspected ADHD.