SEND HUGS

25/03/2026

95% of the time, parenting a child with PDA is about picking your battles, taking deep breaths and being the calm your child needs to manage their anxiety and get through the day.

The other 5% is about defending your ground in the face of all reason, because you've been calm and reasonable all day and you're only human.

Today was a good day, because my daughter went to school. She's meant to be in at 9:00 and we left home at 9:45, but I breathed through it, emailed the school to say we were on our way, went into her bedroom to hand her the deodorant that was about a metre from the end of her bed, made a mental note of the jobs she asked me to do for her during the day, and delayed the start of my own working day to ensure she stayed calm and regulated.

I almost had a peaceful working (half) day in my grasp and I was mentally prioritising tasks, working out my to do list and starting to draft an email response in my head.

When she demanded that I turn the car round and take her home again, I slid into the 5%. I refused and kept driving.

The hill I chose to die on was eyebrow gel. I refused to go back home so my 13-year-old, in full school uniform, could put on the eyebrow gel she had forgotten. I don't even know what eyebrow gel is - I've certainly never felt the need to wear it! I said it wouldn't affect her learning if her eyebrows were... ungelled.

Her voice took on a note of panic, but I stood my ground. Apparently ungelled eyebrows are a really bad thing to the modern teenager. She begged and pleaded, while I attempted to minimise the drama. When we arrived at school, I stopped the car and turned off the engine to indicate that I was not going to drive home until she had gone into school.

We had a little stand-off, then she muttered that she'd go in if I gave her £5. I refused again, and a couple of minutes later, she said she'd go in if I bought her some eyebrow gel next time I go shopping, so she can keep it in her school bag.

And then honour was satisfied - neither of us felt that we had had to back down, nothing was thrown, and nothing was broken. Now I just hope eyebrow gel costs less than £5!

Photo: My woefully ungelled eyebrow.

24/03/2026

Six years ago today was our first day of lockdown homeschooling.

I’d prepared a schoolroom in the conservatory, with a big table, drawers full of craft materials, books and posters around the sides, and a big whiteboard against the wall.

While I wasn’t looking, my then 7-year-old added the final touches - the date (in German), learning objective and word bank in one corner of the whiteboard and a behaviour chart opposite.

At school, she had never put a foot wrong. She feared being “moved down” on the chart more than anything, and by the end of the first month of Reception, she had filled her sticker chart and started filling in the back.

Every day, she would either dance around as she told me she had got to gold or (rarely) tell me in tones of great sorrow that she hadn’t.

My son’s attitude was different from the start. At four, he said to me, “Mummy, I can’t keep doing things really well, because we don’t want our whole house to be full up with stickers.”

By the time he was five, he’d worked out that if they waited long enough, everyone in the class would get a Star of the Week certificate, and nobody would get it more than once.

My daughter was almost entirely motivated not by the desire for reward, but by fear of not getting the reward.

When the behaviour charts disappeared, her focus shifted to a slavish devotion to her teacher. Discovering a teacher didn’t care about her as an individual turned off her motivation like the flick of a switch. In secondary school with many different teachers, I can tell from her progress which teachers “get” her.

My son’s motivation has always been entirely intrinsic (or completely absent). He follows a thought down a rabbit hole, losing the thought process of the rest of the class. Or he struggles with an instruction or a motor skill, switches off and disappears into his own little world.

When he’s focused, he could take over the world. When he’s not, he can barely write his name.

Reward charts never engaged my son. They seemed to work for my daughter, as long as you see nothing wrong with a child performing through fear.

For lasting engagement and to foster a love of learning, they did nothing for either.

23/03/2026

One of the most frequent questions about low demand parenting is this: what if you just… stood your ground? What would happen?

I spent several years trying to parent my child in the conventional way.

I set boundaries and expected her to follow them. We had regular bedtimes, meals round the table where everyone was expected to eat the same food, walks to the park. We took the bus to school and walked home every day. She did gymnastics after school, even when she didn’t want to. I expected her to help me carry the shopping home, to do her homework, and to go to church on Sunday.

When she had a “tantrum”, I ignored her and walked away, determined not to feed the “behaviour”.

I introduced reward systems, naughty steps, written routines, star charts and sanctions.

Through it all, she remained resolutely her own person.

She desperately wanted to please me, and as soon as she calmed down after a meltdown, she wrote little letters of her own accord in which she said how much she loved me and apologised for her “bad behaviour”.

I read all the usual parenting books, articles and websites, and studied what my friends and family did, hoping to identify where I was going wrong.

I was told she was stubborn, manipulative, and that I’d spoilt her - while she learnt to clean up her own messes, apologise for her mistakes and follow every rule to the letter, except for the ones I tried to impose at home.

Then she crumbled. We went through a very dark patch, which culminated in a summer in which she took to her bed, was unable to have the light on or the curtains open, and withdrew from life for several weeks. I had to nurse her through that and find a new way to parent her, that recognised the difficulty she was having and the effort she was making.

A teacher once suggested I was scared of her and should just put up with whatever behaviour ensued if I put my foot down.

He misunderstood. I’ve never been afraid OF her, but I’m regularly terrified FOR her. And I will never return to an approach which was actively harmful to her mental health.

I’ve seen what happens if I don’t take her PDA into account. And I don’t ever want to see it again. Not for my sake, but for hers.

22/03/2026

Imagine I'm selling tickets to a special event for 100 people.

I know it's important to cater for people with allergies, so I include a question on my registration form. It says, "Do you have any allergies?" They must tick one of two boxes: "Yes" or "No".

Ten people tick "Yes", so I know I need to do something for them.

I google, "What food is nobody allergic to?" Based on the answer from Dr Google, I prepare a huge platter of plain rice for the people with allergies.

I've heard that some allergies are so severe that a person can react if they're in the same room as the allergen, so I decide to serve the food for the allergic people in a separate room, just in case anyone has an airborne allergy.

The non-allergic people have a buffet which contains a wide range of hot and cold foods. There's music and entertainment while they eat. It’s a shame that the allergic people in the other room can't see the entertainment or hear the music, but at least they've been included.

Or have they?

If we don't assess people's actual individual needs properly, but put everyone who is unable to access the full menu in a separate room - we've allowed them to buy tickets to the event, so we'll call it our "inclusion room" - have we really included them?

Shouldn't any provision for someone who needs something a bit different start by finding out exactly what they need, rather than making assumptions based on a broad idea of what people "like them" might need?

We could then ensure that people who genuinely need a separate space are properly catered for and enjoy a full, rich experience in a safe environment, while those who are able to participate in the main event have their individual needs identified and accommodated.

Putting people in boxes based on a generic bundle of needs - and leaving them to flounder if they don't tick the right boxes - is not inclusion. It looks more like abandonment.

21/03/2026

I’ve just done something I never imagined I would do.

I emailed a manufacturer to ask whether they have discontinued a particular product and whether, if so, it’s possible for them to check their stock and sell me any remaining.

The product is not “age appropriate”, so I won’t embarrass my child by saying what it is, but it’s something that’s very specific (and not the favourite toy shown in the photo, though we did end up owning several of these, in case one was lost or damaged).

If it has been discontinued, mine is very far from being the only child who will struggle with a change of style. It’s also a product which many children will struggle to do without, particularly with no notice of a change.

I really think that if manufacturers of certain products aimed at babies and children are going to change their style substantially, they should give advance warning with a publicity campaign which reaches widely enough for parents to be aware of the impending change and either stock up if necessary or start to shop around for an alternative product if possible.

The LittleBlueCup - Self Search Facebook group helps parents and carers of children with special needs to find the things they need, including favourite cups, bottles, pacifiers, soft toys and blankets that have been discontinued. It’s amazing what kind people can find in the back of a cupboard and pass on to those in need.

They’ll be my next port of call.

21/03/2026

My daughter told me yesterday that she was really excited when her maths teacher first said they were going to be talking about circles and doing calculations using pi.

She already knew the first 100 digits of pi, and was looking forward to demonstrating her skills.

Imagine her disappointment when the teacher said they could round it down to 3.14!

Sometimes being the parent of an autistic child is being woken at 4 am and being unable to get back to sleep as the Pi song repeats itself on a loop in your head.

Here it is, in case you’ve missed it.

You’re welcome.

Get our Pi Merch: https://asapscience.com/shopThe Pi Song 4.0 (Memorize 400 Digits!): https://youtu.be/q-9PXV0UfkA?si=zfptIFfbdWfPE7iLThe END OF THE UNIVERSE...

20/03/2026

It’s Wear Red Day at school today.

My son has three shirts with red on them. Obviously, this is the one he chose to wear.

Does anyone else regularly feel they need to attach a disclaimer to their child’s clothes?

“She chose this outfit herself” (regularly when she was a toddler).

“No, wellies are not the only shoes she owns.”

“He does own shoes - he just chooses not to wear them. Yes, I’m aware he could step on something sharp and hurt himself.”

“I know it’s too small, but it’s his favourite.”

“It was clean when we left home.”

“He wouldn’t take it off and let me wash it.”

Or today’s disclaimer: “He’s only worn it twice!”

19/03/2026

There's an article in the Law Society Gazette today (link in comments) expressing outrage that the government has admitted it has already made final decisions on key aspects of its SEND law reforms despite the fact that the consultation is still open.

My only question is why anyone is surprised.

Q39 of the consultation document says, "Some of these measures have already been finalised... With this in mind, is there anything further you would like to contribute to help inform the remaining proposals that are still under consideration?"

I've worried about this from the moment I saw the document. I braced myself to read the detail to see how the finalised measures are "clearly indicated within the document", as the government claims.

So far, I can't identify them.

What I can identify are the specific questions asked, and the questions which aren't asked.

We aren't asked if the division into Universal offer, Targeted, Targeted Plus and Specialist layers is a good idea or how children can be allocated to each layer, but only how to ensure children in each layer can be best supported.

We aren't asked if the National Inclusion Standards are the right way forward, but only what the top three priority areas should be.

We aren't asked if the changes should be implemented, but what practical actions can help teachers manage their workload while implementing them.

We aren't asked if ISPs are a good idea or how to ensure they address all relevant needs, but only how to reassure families that they are high quality and contain the essential information and how to ensure they are clear, concise and practical for professionals to use.

We aren't asked if we like the idea of Inclusion Bases, but only how they can be used to meet the full range of needs (answer: they can't) and how they can help children to succeed in mainstream settings.

All the questions presuppose that the proposals will be implemented. The questions are about the details.

I truly hope the legislation will be properly scrutinised and debated in Parliament, but since first seeing this document, I have had no confidence that any consultation responses can cause this juggernaut to veer off course.

18/03/2026

This week, I've been reading about a Russian psychiatrist called Grunya Efimovna Sukhareva.

According to the official history of autism, the first clinical descriptions of autism were published in 1943 and 1944, respectively by Leo Kanner and Hans Asperger.

However, Sukhareva's detailed study of six boys displaying the clinical features of what we would now recognise as "high functioning" autism was published in a German language journal in 1926, having appeared in a Russian journal in 1925. A study of five girls with autistic traits was published in 1927, including a discussion of differences in presentation between the girls and the boys.

The descriptions bear a remarkable similarity to the defining characteristics of autism listed in the DSM-5 diagnostic manual today.

She described repetitive behaviours, inflexibility, a highly developed sense of justice, strong interests, repetitive or stereotypical language, unusual sensitivity to noise and smells, introversion, absence of imaginative play, a lack of facial expressiveness...

She observed that a lot of the atypical behaviours she was describing seemed to run in families. She saw autism as rooted in brain development, rather than in any sort of illness, drug or trauma reaction or response to the way parents behaved towards the child - all theories which have been presented (and almost universally debunked) over the years.

She founded a school for children with neuropsychiatric disorders, and developed a play therapy methodology for children. She observed the children over a long period, and described them with sympathy and understanding, highlighting their strengths as well as their challenges.

There have been many theories as to why Sukhareva’s work was not acknowledged by the likes of Kanner and Asperger, but 100 years after her first article was published, it seems the world is still only beginning to learn much of what she observed then.

Those who think autism didn’t exist “in my day” would do well to look into the research of this pioneering doctor, whose clinical observations would not look out of place in any journal of psychiatry a century later.

(Photo from Wikipedia.)

17/03/2026

The saga continues…

We spent the night sitting on a hard chair in the most un-child friendly paediatric waiting room I’ve ever seen.

Today I have to pick up a new prescription for a different antibiotic - I have no idea what form it’ll be in or how he’ll tolerate it.

I also need to give him five days of antihistamines, which I need to buy over the counter. I tried to get Piriton into him once before - it wasn’t pretty.

I also have some work to finish while he sleeps off the night.

My clients have been let down by enough people - they won’t be let down by me.

15/03/2026

It’s the thought that counts!

15/03/2026

Someone said to me this week, “If you haven’t experienced the exact thing that I’m going through, you don’t understand and shouldn’t pretend that you do.”

It made me think about the difference between sympathy - “I feel sorry for you” - and empathy - “I feel your pain”.

Sympathy is the more passive emotion - you know a person is sad or in pain, and you wish for their sake that they weren’t. I would describe it as more of an abstract, social construct.

Empathy is easiest when you have experienced something yourself and have a memory of how it felt from the inside. But can you empathise with someone if you haven’t lived through the exact same experience?

I believe that you can. Someone who is particularly empathetic walks in the shoes of the person they’re empathising with. They experience the trauma as though it were happening to them, and have the same reaction as if it were their own pain.

Now, obviously we can never truly put ourselves in someone else’s skin. Two people can have identical experiences and their feelings and reactions can be very different. But we can mentally put ourselves into the situation and know how we would feel, and that informs our reaction.

Some people say autistic people lack empathy. My experience is the opposite - autistic people are often so empathetic that the fellow feeling can crush them.

They worry about their friend’s difficulties as if they were their own, and often continue to feel the pain even after the original sufferer has moved on.

I think that’s why so many autistic people become activists, fighting to save sick children, poor people, those in war zones, animals, even inanimate objects like trees. They feel so deeply that they can’t separate the pain of the other from their own pain, and that makes it impossible to walk away.

What I think autistic people are less good at is sympathy - saying “there, there” and offering tea and platitudes.

Sympathy is the small talk of the emotional world, while empathy is the deep dive.

Nobody can feel precisely what another person is feeling, because we don’t have the whole backstory that makes a particular experience exquisitely painful or uniquely traumatising.

But with empathy, we can understand something of the pain, fear, worry or joy that another is feeling. We don’t feel FOR them; we feel WITH them.