The isolation of children with special needs

For too long, the isolation of children with special needs and their families has been a real issue. There are many who have been isolated long before this current virus pandemic broke out. Children who deserve a place in society as much as their peers, but who are pushed aside and forgotten.

Picture shows child on beach, in distance, with words 'many children with special needs experience isolation on a daily basis. It's time for change.'

The title of this post is of course a mass generalisation. If I'd written 'the isolation of autistic people' or 'the isolation of the older generation', it would also stand that it doesn't apply to all within those categories. Some children with special needs* are treated well in terms of schooling and respite and extra activities, and isolation isn't a word which might spring to mind. The reality for many though is that they are indeed already being isolated, or segregated, from a mainstream community. 

I first experienced feelings of isolation before I started this blog, even before our youngest girl was diagnosed with autism. From around the time that Sasha was nine months old, I was taking her older sister to toddler music and dance sessions, but our youngest girl would show through behaviour that she was uncomfortable in those situations. So we quietly withdrew. Our eldest was happy to go to nursery where she interacted happily with others, and I would stay home with the baby, not able to attend the usual groups that I knew most other new mums were being social at.

It wasn't until around three years later, post-autism diagnosis, that we stumbled across descriptions of Pathological Demand Avoidance online and realised that there was a reason for the avoidance and withdrawal behaviours which our youngest girl continued to show. There was a lot I hadn't been able to join in with; I felt isolated most days. 

Time went on and I realised the importance of 'Find Your Tribe'. Knowing that there were others out there who were having similar experiences brought a huge sense of relief, and with it a desire to explain to others who might have been judging our 'different' way of life. More than that, it was an explanation to myself as to why I wasn't able to live life the way I had when our first child was born, the way I would have wanted to as a new mum for the second time.

Ten years later and the isolation is still real, having been at home with my daughter out of school for the last ten months. Our story is summarised in a recent post of mine but I'll attempt a quick 'nutshell' version here. Our autistic girl managed in mainstream school up until the age of ten. The challenges of this environment were always obvious but she had great support until the time when it finally became apparent that she could cope no longer. It was towards the end of Year 5; she went on to have eight months out of education. She missed most of Year 6, missed all the 'end of school life' activities that happen for many others such as 'last' assemblies, and proms, and exams. This is one of my favourite photos, when Sasha went back to meet with her classmates and experienced that moment of feeling included (she's the one not in summer school uniform...). 

image shows group of young girls hugging in a park

After those eight months out of education, she moved on into a special school where she managed a year of patchy attendance before a change introduced to make her and others feel less isolated, and more like they 'fitted', led to an event which meant she was no longer able to attend school at all.

That was last May; our daughter has been at home, with me, since then. Her PDA means that she is not ready to be home educated; she desperately wants to be in a school, having those social experiences which she is aware many other girls her age have access to. I've been unable to impose any home learning schedules on her, which I appreciate is hard for others with little knowledge of PDA to understand. I'd implore anyone who has time on their hands right now to read my post Ten things you need to know about Pathological Demand Avoidance, as a starting point. 

The truth is that if I was able to help our youngest daughter to learn, following a curriculum, I would have been doing it myself for the last ten months. Memes such as this one below which have been doing the rounds do make me smile, albeit wryly. I can imagine this being very fitting for many typical teenagers.

At the same time, I know that there will be thousands of parents out there worried about missed learning and how they will keep themselves sane with the stress of having their own children home all day... My first bit of advice is to relax. Then remember that children also need time to relax. When it comes to it, most children are actually quite resourceful and many can amuse themselves for long periods of time. I saw a brilliant post today over on Inside, Outside and Beyond, where the blog owner's granny had written a post about Motherhood during World War II including the words 'they coloured and painted and some loved to read.  They played board games and invented things to do'. (As a side note, Twitter, which is often much maligned, also came to my rescue late last year when I successfully managed to track down an old school friend for my mum, thanks to help on there). 

Funny schedule for teenagers

My other advice is for parents currently stressing over the whole 'too much screen time' issue. Technology can be a great learning tool and my view is that it should definitely be embraced in these difficult times. Whilst those alive in wartime managed without, our children and the next generation don't have to. We are lucky that our autistic girl who is out of school is still curious about life. She teaches herself a lot, mostly online learning about life and her chosen topics or special interests via the medium of YouTube. By topics I don't mean maths, history and those other academic subjects, but areas of interest such as Steven Universe, Nintendo, art and social and emotional development. They should definitely be part of her curriculum.

In our experience, screen time doesn't seem to have done our girl any harm. What is affecting her badly however, is the lack of social interaction. While everyone else gets to experience this isolation over the next couple of months, thanks to the pandemic, it would be good if more people could spare a thought for those who have already had this isolation for months and even years. It's not just my daughter, it's thousands of other children who have been excluded, pushed out, ignored, treated as 'too complex' to be helped.

I've accepted our life fully as it is and am grateful for the hugely different learning curve I've been on but there will always be a small part of me which would have liked to be part of the typical, the not-isolated. But my thoughts return to our youngest daughter who has already spent a large proportion of her life feeling isolated. I want to make life better for her, but feel powerless to do so because of the lack of support, and the rigid systems currently in place.

Now school has been cancelled for all, I'm reading lots of messages from parents worried that their child will miss out on learning, parents wanting to impose daily structures for learning on their children but are anxious because they don't know how to, parents sad for their children who will miss out on important school based events in their life, such as last assemblies or proms. 

This world of isolation is one which many families have already been living in. Kate over at The Passable Parent has summed up the feelings of many in her post and Kelly at A day in the life of severe autism touches on the extra challenges that this new regime will bring for many parents of children with additional needs. I also recommend the great video on The Autism Diaries talking about the implications of Coronavirus and isolation in as positive a way as possible.

I'm hoping that highlighting the everyday challenges for some could mean that we see big changes in society going forward once these stressful times have passed. Maybe this enforced 'stepping off the treadmill' for huge numbers of people could lead to some good? Educators at home with time on their hands could perhaps start thinking about these children who have been excluded, ignored and forgotten for so long, to come up with ideas which are outside of the current box, to explore different ways of helping these children reach their potential. Every child matters. There could be new plans developed so that isolation is not a reality of the future. 

Forget the current systems, let's see real change. Flexible thinking. Smaller schools, smaller class sizes, no 9am-3pm but instead valuable shorter sessions using facilities already available and a focus on less academic and more creative subjects for those who could thrive in them. Technology, art, music, drama; there's a place for all of these in the world and many children who have much to offer in these areas but who are currently being denied the opportunities.

This should be a time for everyone to reflect on what matters most in life. Health, and happiness (mental health). Not exams, not testing to a system. Let's recognise everyone's potential, regardless of the school system. These are worrying times, but wouldn't it be great if some good came of them?

I wanted to end on a positive note; the power of technology and social media. It has been brilliant to see so many people online pulling together for the difficult times ahead. There are so many free resources and ideas for those children who will be at home from now. Over on Miss Tilly and Me's blog there are some great ideas for fun for all ages, both inside and out, and I loved Colette's round-up of things to do during school closures on her We're Going On An Adventure blog.

My advice is to make the most of the internet. Seek out other families who already have experience of having children at home. Malin at Sensational Learning with Penguin is one such example; in her blog she covers areas such as sensory play, multisensory activities, arts and crafts and baking. The Autism Page gives some ideas on cooking with kids with autism and Kiddycharts (www.kiddycharts.com) is another fantastic resource full of lots of different free activities - during this month of March there was already a special #31DaysofLearning series running which is definitely worth checking out.

If you have any other suggestions of places to turn to, whether that's for advice, support, activities or ideas of things to do, please do leave them in the comments below.



*Personally I am not generally very comfortable with the phrase 'special needs', I prefer the term 'additional needs' - but this post is not about language choice.

For more information about PDA, please read the book shown below: 

'Understanding Pathological Demand Avoidance Syndrome in children' *

* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.

(Other PDA books can be found in my 

'Books about the Pathological Demand Avoidance profile of autism' review post.)

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

Books about the Pathological Demand Avoidance (PDA) profile of autism

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