Autism assessment

[whoami24601]

Got a meeting next week with school SENCO to ask about putting DS6 forward for an assessment for autism. Has anyone been through this and can help me organ8se my thoughts? Thanks!

Anyone at all?

Hi. My ds7 has autism. Plenty of senco meetings attended over the years.

Is there anything specifically you want to know?

Do school have any concerns? X

Didn't want to read and run. There is some basic info on the NHS website including tips for when you speak to someone. Hope the SENCO is helpful.

School haven't raised concerns which I think is what's making me so nervous! He is currently mostly coping at school but struggles with the busyness of the classroom a bit. We have a family history of ASD and I know from experience it's better to put things in motion before it's needed rather than waiting for a crisis point.

@whoami24601 write a list of all of your concerns, take it with you and if you don’t get chance to discuss everything on your list at the meeting hand it to the senco to finish reading afterwards.

If your son isn’t generally causing any problems at school then it would be quite easy for him to go under the radar.

It’s the more challenging / wild children who stand out and have the school take notice.
(my ds being number 1 in that assumption )

Good luck for your appointment

Can I write out my concerns here and tell me what you think? He doesn't tick the boxes from the NHS website and I'm struggling to articulate properly what I want to say.

Of course, write it all out here. Even the act of writing it out can help organise it more in your mind.

Ok here goes:

1. He was very delayed with his speech. Didn't speak much til nearly 3 and then was elective mute outside of the house for another year or so. He's very articulate now but often forgets basic words mid-sentence e.g. door.
2. Has 'shutdowns' when unsure and refuses to make eye contact or speak. This can be something simple like asking him what he wants for breakfast or often if he's in trouble.
3. Used to have horrendous meltdowns when younger. It felt like it was an essential part of regulating his emotions. He be grumpy for hours and then would kick and scream for half an hour plus but once he'd done it he'd be back to his happy self. It got to the point where I'd almost encourage the meltdown so he could release the pent up emotions quicker!
4. Has had many issues with switching off at bedtime. We've gone through the mill with trying to sort that and he mostly does go to bed fine now but at the worst last year I was putting him in the car to drive him to sleep like a baby!
5. Low impulse control. He is not naughty but if an idea passes his brain he can't help but act on it. Examples include: drawing on the walls/himself/ his clothes; opening his brother's baby gate on his room in the morning; pulling my mum's washing off the line etc
6. Struggles to stay calm when he perceives he's been wronged e.g. his brother taking one of his toys. He will fight and snatch it back rather than finding me. Even if I'm in the room and trying to sort the situation!
7. Issues with toileting. Still has frequent (daily!) accidents and has to wear a nappy at night. I think this is a sensory/ anxiety thing. He has full control of his bladder I just think he's not bothered enough to stop what he's doing and go to the toilet.
8. He does get fixated on things but I hadn't really thought about it in these terms. He loves phonics and will spend hours sounding out words and talking in phonemes. Also he's really into repeating patterns at the moment.
9. Issues with being dirty, especially hands. Will happily get messy/ wet but the instant the activity is finished he cries to be clean/ dry again.

That's what I've got for the minute but I'm sure more will come!

Thoughts?

Sounds good OP. Is there anything you can write about how he relates to his peers or similarly aged cousins etc who he plays with? Also did he have any input from SALT or anyone else who might back up your concerns?

I'm going to ask school about how he relates to his peers there. He seems to play with the other kids but doesn't really have 'friends'. He doesn't seem to struggle at home but we only socialise with a limited number of children (Might be a little bit on the spectrum myself...) all of which he's known since birth!

He never saw SALT. It was raised at his 2 year review that he wasn't speaking but they don't refer until 2 1/2 here. His understanding was very good and he had gained some words by then so I declined the referral.

When he was younger he really struggled with playing with other children and was on a behaviour chart in nursery. There were a couple of years where I didn't take him to soft play because I couldn't take my eyes off him for fear he'd last out!

When he was 2 I made a special effort to take him to playgroups specifically to work on his playing with other children. I used to shadow him and show him how to behave.

Any other thoughts?

Sounds like you've got some good info there and definitely enough to request a referral. In the end, our GP was the one to refer us for assessment, so you can use them too for support with the process. We included the GP because of tummy aches and pains - anxiety-induced: I have a daughter so the symptoms can be less clear.
I read on another thread that 'you know your child' and must just push forward with what you know and what they need - trust yourself.
We get our assessment feedback tomorrow...

Thanks! I spoke to his teacher today to keep her in the loop and ask about social skills. She was very supportive and said she definitely thinks it's worth investigating so I feel much better now. She did say it's quicker to go through the GP so I'll make an appointment ASAP.

Meeting tomorrow 😬 wish me luck!

We are going through this with our Ds age 7. I've been asking the school for years and it's only since he has become difficult at school this year they have agreed with me.
We went through cahms had the initial letter now just waiting.

@Ilovechocolatetoomuch it’s sad how they have to cause the school problems before anything gets done. Fuck the parents at home eh.

@whoami24601 good luck x

Thanks! It actually went really well. School were very supportive. I went in and asked for him to be referred and she just said 'ok, I'll get the forms sorted. Is there behaviour at home that's making you think he's autistic?' At which point I felt a bit of a tit saying 'I've brought a list...' I was expecting a bit of a debate but she'd agreed almost as soon as I walked through the door!

That’s good whoami I’m pleased it’s was fairly straight forward to you.

My gp suggested that 7 was too young to send for an autism assessment 🙄

Sorry I'm late to this (though glad your SENCO was so helpful!) but I have a 7yo DD who is autistic, and your list sounds somewhat familiar so thought I would post. She also had somewhat more "obvious" autistic traits mainly when younger (e.g. took her longer to play "with" rather than "alongside" other kids, and was more comfortable with adults than other kids for a long time). She still has very intense interests, tends to zone out and not respond to things like being asked what she wants for breakfast, that kind of thing (not requiring any intervention or support - just differences). Our main "problems" now are with transitions/new things that make her anxious - but I'm still glad we have a Dx in place as I think for a lot of children things get harder socially as they get older, so it's good to get your ducks in a row as you say. I think it also makes schools take things like transitions a bit more seriously and thoughtfully (or maybe we've just been lucky).

For future lists it's also worth thinking about any physical things that might be sensory. E.g. DD and I struggled a bit with BF to start with, and she was a very late walker and hated putting weight through her legs - which I think was partly hypermobility/low muscle tone, but also possibly sensory. It didn't occur to me for a long time that those could be part of the autism rather than just co-occuring.

Big eyeroll at your GP @Ilovechocolatetoomuch ! I would say DD's presentation is fairly subtle (though I may just say this because like @whoami24601 I share a lot of her traits myself, so a lot of it seems pretty "normal" to me!) - but she still started to get access to assessments at around 2.5 and was Dx'd just before her 4th birthday.

I'd take that list to your GP or email it when you make the appointment and ask for a referral for a neurodisability assessment. Usually they screen for adhd/asd but as part of that they also try and rule out other things so can be useful. Unfortunately waiting times are very long at the moment (over a year in many places and up to 4 in some) and then they triage the triage to the triage creating hoops of paperwork, - but it worth pursuing.