Touch the Spectrum

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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A really useful video about FND (Functional Neurological Disorder) from Zara Beth. Unfortunately, many people who are affected, experience significant gaslighting and are often made to feel like it is all imaginary or made up. FND is a very real condition and can be significantly debilitating.

Really hope this is useful to people.

Functional Neurological Disorder | Symptoms, Treatments & My Experience 🧠 here’s some information and my experience living with FND! 💛 after 6 years of dealing with symptoms, i can say it is *such* a difficult condition to live wi...

Whatever your Christmas looks like, we hope you find some joy and peace. Remember, it’s OK to do Christmas YOUR way.

EXCITING NEWS!!!!

For a long time, I known that wellbeing was an important part of who I am and being able to cope with my complicated life. I have also witnessed the benefits of prioritising wellbeing in the lives of the young people and families that I work with.

I have learned that our wellbeing is the centre of everything, the cornerstone of our life, but it needs to fit our motivation, our complicated lifestyle and our overwhelming worlds. I needed a selection of personalised tools that I could shape to fit certain situations, that. So I started building something different — something that makes room for burnout, sensory overload, recovery from illness or injury and the complexity of our lives, but one that also celebrated our weird and wonderful brains and bodies, embraced our fluctuating energy levels and the extreme stress we deal with, whilst being optimistic, noticing the joy and being grateful to be alive. I built the Live WELL Toolbox.

Remember:
We don’t have to live like everyone else. Start where you are, with what’s possible for you.
One deep breath, one softer choice, one tiny pause at a time.

If you’ve ever felt like life is overwhelming, whether you are neurodivergent, recovering from illness or injury, living with chronic illness, or simply your world is chaotic and pressured - Touch the Spectrum is developing for you. If you want to know more about about The Live. WELL Toolbox, follow us for more information or take a look at my bestselling book “Your Life, Your Family! Your Way” (Amazon Link https://amzn.to/49QVpYk )