Touch the Spectrum

Over the years, so many people said “you should write a book”, but I was too busy. There was simply no time.

In 2021, during lockdown, I had a stroke. It was devastating! While I began to recover it became clear that my life would never be the same, suddenly I found that I now had the time.

On March 1st 2024, my book “Your Life, Your Family, Your Way” was launched, then this year the audiobook version was released.

Maybe this is the book you need to read this summer.

Link to book: https://amzn.to/4p0Q7R2

As someone who provides packages for EOTAS (Education Other Than At School) for young people unable to attend school, I KNOW how beneficial programs like this really are.

These programs are creative, child and family led and recognise that education doesn’t just happen in a school building!

This is a very important consultation for children and young people like the ones that I work with.

If you can please complete it

SEND reform: education otherwise than at school We are seeking views on improving support, quality and oversight for children and young people who are educated outside of school.

So true!!

Today I met a lovely nine-year-old girl. In my assessment room she was bright, funny, sassy, articulate and full of personality. She engaged beautifully, chatted readily and absolutely aced the assessment. On paper, anyone looking only at those results might conclude that she is doing just fine.

But she’s not.

At school she can only manage a very limited timetable. Simply getting into the classroom can feel overwhelming. She hasn’t really completed a piece of work since February.

How can both of these things be true?

Because communication, learning and language processing do not happen in a vacuum. They depend on how safe we feel. They depend on who we are with. They depend on the environment around us. They depend on whether our nervous system is calm enough to access what we know.

This little girl is autistic and has significant sensory processing differences. In the right environment, with the right support, she can show you just how capable she is. In the wrong environment, those same skills become much harder to access. This is why assessments should never be reduced to scores.

A child may have the language skills. They may have the intelligence. They may know exactly what to do but if the environment is overwhelming, unpredictable, noisy, demanding or unsafe, those abilities can become temporarily inaccessible.

The question is not always, “What can this child do?” Sometimes the more important question is, “Under what conditions can this child show us what she can do?” When we get that right, children stop looking like they are struggling. They start looking like themselves.
She showed me her gymnastic moves! 😀

I have a real issue at the moment! The online world seems to be full of self-proclaimed ‘experts’, they might be a parent, a teacher, a neurodivergent adult or someone who experiences a said issue or disability.

Sharing your story about your experience of living something has value, it’s awareness building, it might help people feel validated or people might recognise themselves and draw meaning.

BUT positioning yourself as an expert, that’s dangerous (and believe me, I have seen some seriously dodgy stuff). Tough love, compliance, resilience building, however you couch it will lead to trauma.

Telling people to use this medication or that ‘therapy’ because it worked on your child or you, is dangerous. You are not qualified or medically trained to dictate what someone else needs.

NB: For me this post applies to so much more than PDA, it is about so many other diagnoses, disabilities and responses to stressful situations. It is about anxiety, panic response, understanding communication, awareness of the situation, the environment and the people involved, just for starters. As SmallTalk Speech & Language Therapy says, don’t believe everything you see/read/hear on social media.

Please don’t believe everything you read on social media about PDA, even when it’s presented in very confident tones by so-called “experts.”

I’ve just read yet another post this morning that talked endlessly about “behaviours,” “what to do when they refuse,” “how to respond,” and “strategies” that were essentially behaviour modification dressed up as neurodivergent-affirming practice.

If the focus is still on compliance, praise, reward systems, consequences, “planned ignoring,” or managing the child’s behaviour without properly understanding the nervous system underneath it, then it is not genuinely PDA-informed support.

Where is the discussion about reducing language when a child is escalated?
Where is the understanding that too much talking can increase threat?
Where is the recognition that anxiety and loss of autonomy drive the presentation?
Where is the focus on environment, co-regulation, relational safety, sensory load, flexibility, trust, and collaborative support?

Children and young people with a PDA profile are not “being difficult.” They are often overwhelmed, dysregulated, and operating from a nervous system that perceives everyday demands as threat.

You cannot reward a child out of survival mode.
You cannot sticker-chart your way through panic.
And you cannot behaviour-manage a nervous system into feeling safe.

We desperately need more critical thinking around PDA content online, because confident misinformation is still misinformation.

Unfortunately, I can’t be there but I will be supporting and shouting from a distance.

Today, we’re coming together in 12 locations across England to 📢

The Government’s proposed SEND reforms would remove the legal rights that children and young people rely on to get the support they need. So we are sending a very clear message: DO NOT take away our children’s legal rights.

If you’re attending today, we look forward to seeing you there!

If you can’t attend in person, keep an eye on our page from 11.30am, where we’ll be going live from the London demonstration throughout the event.

You can also join in from home by sharing a photo of your homemade signs or banners, or by taking part in our photo campaign to show why SEND legal rights matter to you. Please use so we can see and share your posts.

[Image description: Graphic with a dark blue background reading 'TODAY’S THE DAY!' in large white text at the top. In the centre is a turquoise box with the words 'SAVE SEND LEGAL RIGHTS' in bold white capital letters, overlaid with a red banner reading 'NATIONAL DEMONSTRATION'. Below is the date 'Saturday 9 May 2026' in white text.]

World Autism Day 2026

This year’s theme is ‘autism and humanity - every life has value’.

I really want to do a positive post, say how far we have come but this week, in my work, has been full of examples of poor basic autism awareness and acceptance. So, I have lots to say about how little our society values the lives of autistic people.

Too many families of autistic children are forced to battle just to get their children’s needs met.

Too many autistic parents are demonised, living with gaslighting and put through safeguarding investigations unnecessarily.

Too many autistic children are not in school because they don’t have a school place, or are struggling in a system that is inappropriate or inflexible.

Too many autistic young adults are left ‘in the community’ unsupported despite having a social worker or care plan.

Too many eloquent autistic children and adults are not being seen because their words do not reflect the severity of their needs.

These are just a few examples where autistic people’s lives are NOT valued.

Today in 2026, we see another attack by the powers that be on autistic children and their families!

We have a long, long way to go!

As most people know, in 2021, I had a debilitating stroke. It left me with significant mobility issues, on top of pre-existing fluctuating ones. Walking is now more of a wobble, and I rely on my wheelchair.

In March each year, Strokes Charity holds a March On Event. This year, like the last 4, I set myself a step challenge.

In 2022, my target was to do 2000 steps in March.
In 2023, my target was 5000 steps.
In 2024, my target was 10,000 steps.
In 2025, my target was 30,000 steps.
This year, I set my target at 50,000 steps.

To be honest, this almost broke me!

However, I have achieved it.

My aim was to raise £200 for Different Strokes, an incredible charity supporting younger (working age) stroke survivors. I have benefited from their services so much over the past 5 years.

Having smashed the £200 target, I would really like to get it to £500 - this money will make a huge difference to people just like me. Please donate if you can, and feel free to share the link.

https://www.justgiving.com/page/paula-holden-7...

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