ASD/PDA & nursery/school refusal - can anyone give me some hope?

[BombyliusMajor]

My 4yo DS is awaiting assessment for ASD with a PDA profile. After initial screening and a discussion with the clinical psychologist it seems highly likely he will get a diagnosis.

He masks at nursery - they think we are batshit for even thinking there might be an issue as he is gentle and quiet and obliging (though often 'stubborn'). But increasingly, after various periods of Covid-related nursery closure, he is very violently refusing to go in at all. To be clear, he loves nursery, and even on the days when he refuses to go in he tells us he is sad not to be there and says he misses it, so it's not like there is something particularly traumatising about being there, it's just the transition there, and the feeling that it is expected of him.

He has cottoned on that people want him to learn to read and write and draw, so he will not pick up a pen or pencil. He pretends not to know the difference between numbers and letters (I know he does know the difference - he certainly did a year ago before he began to feel pressure to engage with learning)

I am really worried about the future - in terms of his education, my ability to keep working (I am by far the lower earner so if someone had to drop out of the workforce it would be me), our finances, my sanity.

For the moment we are trying to get a nanny to come in the mornings and help him get ready and take him in to nursery, as he does better when there is a fun, non-parental 3rd party there to help ease transitions. This alone will cost 1/3 of my salary, but if it means we can actually get him into nursery it will be worth it. But if it doesn't work I don't know how I will deal with my fear and despondency about the future.

I get overwhelmed when I think about all the fights we have ahead of us with EHCPs, etc. Can anyone give me any positive or hopeful stories about their PDA children coping in school? Or at least attending? Have any of you been able to continue working? My greatest fear is having to homeschool him forever and losing any semblance of a self of my own.

Please someone tell me I am catastrophising.

My son has ASD and can be very demand avoidant when he is anxious. Transitions are a huge problem for him particularly the home/school transition (it was worse before we moved him to a new school but it can still be quite tricky now.

I find with ds that most days require a different tactic. Some days a transitional toy is enough to get him in happily. Other days dh would have to carry him on his shoulders and pretend to be a horse (yes he looked like a mad man!). Sometimes images (photo of a favourite toy) and social stories help. With ds we have to give him the right information at the right time too, if you tell him about a transition too soon or too late it causes a meltdown. Everyday is a gamble!

In terms of his education it sounds like he will need to have the right kind of support, which I know with PDA can be tricky. For the EHCP you need proof that he is unable to access education without support of an EHCP (so funding or specialists beyond the ability of the school/nursery to provide). It can be hard if your child masks because they appear to cope at school.

Have you looked at the PDA society website as they have lots of good behaviour tips for children with a PDA profile, which might help you.

Thanks for replying! Yes, have been on the PDA website, read Steph’s 2 Girls blog, have read The Explosive Child & the textbook on PDA. Often things we try (transitional objects etc) will help for a day or two before he starts to see them as demands in and of themselves. I absolutely know what you mean about needing to signal transitions at precisely the right moment. I feel like we are constantly walking a tightrope between frank refusal and total meltdown.

How old is your child, if I may ask? Have you been able to keep working? Every woman I know with an autistic child with challenging behaviour has had to give up work eventually, and I am so frightened by the thought of this.

Yes a tightrope is a good way to put it!

Ds is now 7. I'm not working but then again I was always freelance/self employed, so I never had a 'career' as such. When jobs come up me and dh swap caring responsibilities if we can, otherwise I turn the work down. Cutting down on work did save my mental health though as I was drowning with all the appointments/paperwork/challenging behaviour/work obligations/client expectations.

It was quite stressful and demotivating initially but now I'm using the time when the kids are at school to do a distance learning degree and to volunteer.

DS is 10 now and is similar with transitions (when younger it would be literally about everything throughout the day). I didn't know he was autistic until he was 7 so I just assumed I was doing something wrong - no rewards or consequences worked we just battled through. Not going to lie, it was pretty grim. The worst attendance he has had was last term (80%) and that was because he'd had so long off in lockdown then went to key workers where everything was weird. School don't see his autism at all.

I still work full time (and have all the way through) but in a more chilled version of my previous job. If you can find a good nanny or child care provider I think that would be ideal - we went through a lot as DS was difficult but also because the child carers were quite transient.

Oh and DS didn't hold a pencil until he was 6.5 and slow to read but fairly proficient at both now (although hates writing as he's hypermobile and it hurts).

My son is diagnosed with Pda plus other things.
He went fine into school for 2.5 yrs then covid has hit and he’s really bad now total school refusal.
Suppose it just depends on each child.
Doesn’t help when you read more than 70 percent of children with PDA don’t go to school 😳 although my son can easily do all the work top sets and get it all correct but he will only do the work IF he wants to! Sometimes he doesn’t 🤪 x

Hello, my son is now 8 and diagnosed with ASD. I tried to send him to nursery at 2 but he hated it, I ended up using a childminder until 3.5 which was so much better for him. He then went to a preschool, I had difficulty getting him in at first but the staff were great and tried different things to encourage him and he settled down.

At school we have also had periods of school refusal and that's been hard, but I've always insisted that he goes.

For the last year we have had no problems at all, and he's now at an age where he can talk through any problems or worries.

However I definitely could not send him to a holiday club. That has affected my career choices but it's ok, I still work and my husband and I take unpaid leave to cover school holidays.

Is your nursery working with you on transitions? Having a favourite activity or snack lined up as soon as he goes in could help. The nursery staff should be able to help you with this.

Hi OP, feeling for you as I read your post. I have one DS with ASC (6) and one DD awaiting assessment (3) and DD I think is showing demand avoidance traits, and I feel scared by it in a way that my son's ASC dx doesn't scare me.

If maintaining your career is important to you, look ahead now and get strategic so you can find a way to keep working in the years ahead. You will need your MH intact, your marriage intact and your sense of self to be strong to cope with all the extra challenges ahead for your family. If working is good for you, you must safeguard it as a priority. 1/3 of your salary for a decent morning nanny you can really rely on is not a waste at all, in fact I think I'd say spending your whole salary would be worth it.

Is your child starting school in Sep? Can you throw everything you've got at supporting that initial transition eg request unpaid leave for a few weeks to be on hand to focus 100% on supporting those first few weeks?

Has he got an EHCP with robust support? Will his support worker and class teacher attend any PDA training ahead of Sep?

Other small things which helped us were practicing the new routine for the week ahead of school eg trying on uniform each morning, doing the walk to school, looking through gates into playground and taking about what we could see, social story from school.

Can school do an orientation day (or three?) ahead of all the other students arriving?

It's amazing how much difference the setting makes. My child is completely different in his new school. There's lots the right setting can do for him such as giving him sand or shaving foam for writing, making a book about what will happen etc etc. The biggest thing we have found with our new school is simply that they believe us. They believe that our son IS anxious under the masking. Your son might flourish in a setting that will accept his worry about writing and work with that.

We tend to think of him as a couple of years younger than his peers in social and emotional terms so it's as if he is always in over his head a bit, but supportive TAs can really help with that. These things do come. We see him going through "developmental stages" like learning to draw and construct things but much later than his peers, so it was fine to just let him off drawing when he wasn't ready for it.

Very small schools can work really well with anxious children. We don't worry too much about the future. Concentrate on getting this year to work. Keeping his anxiety down so he can learn now is the best investment in him coping next year.