'If you have children happily going to school, you are privileged'

Lily Hitchcock writes about her autistic daughter: the early masking, having her assessed, getting an EHCP, going to tribunal and trying different paths before realising she needs to be at home.

When I look back, I realise the signs that our eldest daughter were autistic were there much earlier than we thought. So much of this is to do with the barriers to full awareness - and understanding how autism can present in girls.

This was the start of an eye-opening journey of discovery and realisation.

It can be painful looking back at this; the well-meaning but dismissive comments from others, the gaslighting from ‘professionals’ and the unlearning we had to do ourselves.

Our daughter was a high-masking, misunderstood autistic girl with so much to give, with so much potential, with so many wonderful strengths and wonders to her. Potential, strengths and wonders all hidden due to the way the world is, the way the education system is.

She was six when we got her diagnosis, which we had to seek privately due to the waiting lists and our desperate need for understanding and support. I think, deep down, I knew it in my gut earlier on. I’d done the research, training and courses, listened to autistic voices and it was all there.

I didn’t like the assessment itself, it felt too much for such a young soul but it felt like the only option in order to get her the best support and the right understanding to help her heal.

So, I don’t regret getting the diagnosis. It’s been important for us all and we have been teaching our daughter from an early age how to rightly advocate for herself. Also, to focus on her strengths but to also understand her needs.

We all have needs; they’re just different.

However, the diagnosis itself was just the beginning.

We moved from one mainstream school to another, in the desperate hope for a more nurturing approach to her learning and wellbeing, only to be faced with more gaslighting, more misinformation and lack of support, and ultimately the realisation that mainstream wasn’t going to be right for her.

We fought hard for an EHCP only to be hit with every hurdle possible: refusal to assess, refusal to support parental choice of school, refusal to listen to private professional reports. All of it. This took a year away from us.

Eventually, our case went to panel, and they named a specialist setting that we’d chosen. We were elated. We felt so proud and happy that we’d finally got the outcome we thought would be right.

The parent blame we experienced throughout this time was horrific. It’s amazing how privileged you begin to realise so many others are, as that’s ultimately where the misunderstanding and judgment comes from.

If you have children happily going to school, you are privileged.

If you’ve not known the pain and suffering of an unhappy child, unable to attend school as just the thought of returning causes so much mental and physical suffering: you are privileged.

You wouldn’t think such an assumed basic comfort would be considered a privilege, but it really is.

I would love for others to see it that way, so when they hear a friend talking of this experience, or they see a parent struggling at the school drop off, they can be there for them.

Listen. Understand. Reach out.

Not one parent I know who has been through this similar experience wants to have to change their child’s school, wants to fight for years for an EHCP.

And to then have to fight all over again when the annual review comes up or the next school placement falls apart, for reasons out of their control.

We choose what is right for our children so that they can live happy lives.

Where we’re at now

Sadly, we are back in a similar situation again, a year later, as the specialist placement wasn’t right for our daughter.

There has been an unbelievably high turnover of staff at this school. Our daughter was about to have her fourth teacher in under a year. This, amongst many other things, has caused a total breakdown in safety and trust.

So, she’s currently home again and we are now pursuing EOTAS (Education Other Than At School) as we know that’s right for her.

We’ve tried every other option. Again, this means regular emails and researching and sadly fighting the system once again.

Our daughter’s self-advocating

We are almost three years on from our daughter’s assessment and she now creates art focusing on what it means, to her, to be autistic.

She will explain her needs to us and her younger siblings.

She is becoming her authentic self, day by day, and I hope this is paving the way to allow her to be a confident autistic adult.

She even came with me today to meet a friend for coffee. We always bring headphones and the iPad so that she can focus on a game she loves or zone out, but she wanted to be part of the conversation today. This was a huge step forward for us.

The conversation happened to be on advocating for children (it often is, now…) and she joined in. It was an amazing moment after many years of worrying and lots of struggles (all of which are still there), to see just how knowledgeable she is and how able she was to provide her opinion.

My own neurodivergence

I realised that I was neurodivergent the second I knew our daughter was. It was all there and the penny dropped when I had a deeper understanding of masking and how autism/adhd can present in girls and women.

How internalised it is in comparison to what the outdated stereotypes and medical model teaches us.

I immediately booked myself a private diagnosis, which I sadly couldn’t afford to see through to the end, but the initial stages and reports told me enough, along with my own knowledge and experience.

The focus at the time was also very much on advocating for our daughter.

Again, we are three years on from this now and I learn and understand more every day. It’s opened my eyes and made me so much more understanding, patient and open; not just with others but with myself too.

I think this can be seen as a real blessing behind all the struggles, advocating, exhaustion and burnout.

This, plus the community I am now part of - I have never known such heartwarming empathy.

I truly don’t know where I’d be if it wasn’t for the deep and meaningful conversations (and mass over-sharing) I can have with other parents in similar situations.

The education system

As soon as I hear or read the word ‘school’, it’s like I have PTSD. An internal shiver runs through me. And to explain this to others can be so difficult. There just aren’t the words, sometimes.

Something I don’t see talked about too much is parenting children who have very differing needs. Loving them each whole-heartedly and wanting what’s best for them individually - and desperately trying to provide that - but the reality being that it just isn’t possible all the time.

Our eldest simply cannot cope in school settings, we tried two different mainstream schools and a specialist independent school - neither worked. Sadly, it’s caused huge knock-on effects to her self-esteem and mental health.

Quite simply, any environment that isn’t home isn’t right for her right now.

It’s an odd experience to have been through with mainstream school in particular - I think it changes you forever. How you see schools. It’s like the facade has gone and you see through everything and almost ‘know too much’.

My second daughter still attends the same mainstream school and our youngest (son) is due to start in September.

I hold so much worry for how it’ll be for him. Whether the next class move for our middle daughter will go smoothly or bring out some difficulties.

When you’ve opened your eyes up to the issues within the school system, it’s hard to see past it for any child, not just neurodivergent children.

Is it really working for any of them? This is a constant question in my head, subtly waiting in the wings for when something may happen to bring it into the spotlight again.

Ultimately, school has been a very damaging place for our eldest, it’s made us hyper-alert and vigilant, which whilst hard, also assures me I will be the first one there if I see any signs of upset in my younger two.

Our home-life

Home is everything. That’s another thing this journey has highlighted. The safety of home. For all of us. No fear of judgment, no unexpected environments that can trigger meltdowns or difficulties. Our safe people, our safe space.

That’s not to say it doesn’t have its moments of stress and dysregulation - it does. But it’s where we all can feel safer to be our authentic selves.

I’m currently signed off work, as my eldest is home and we’re yet to receive the right support from the local authority.

We try our hand at a little bit of home-ed here and there. We are both creatives, so this often revolves around art. It’s a lot to juggle, but it’s what’s right for her.

We don’t have any local family to provide a constant support system or ‘village’ so that is hard, but we do our best.

I find myself regularly forced to reassess how we do life. I think that’s another unspoken thing: once you’ve been through the battles of getting support (and we’re still not there) you really see what’s important.

It’s not work, it’s not your children going to school and achieving good grades or getting 10/10 in spellings that week - it’s being content and happy.

It’s being both physically and mentally healthy, enjoying your day to day and knowing you have the right people by your side.

It’s doing things exactly as you wish to do them and in the unique way that works for you. However, that may look.

I can honestly say I am a far less judgmental person than I used to be, having gone through this experience. How easy it can be to look on at someone else’s life and make a quick, uninformed judgment.

For us, home is our sanctuary. It’s when we try to do anything outside of home that it gets harder.

Our children enjoy different things. One adventure for one is too painful for another, so we have to divide and conquer. It can be hard to adjust in that respect, when you love to be together.

Our eldest loves home - the quiet - but also the outdoors, the sea and water. She loves to dance, act and sing and she holds so much talent.

Our middle child is wilder, active and energetic. Beautifully kind and loving, she loves movement and jokes, and loves a little prank.

Our youngest is quiet but full of character, loves routine and adores his older sisters. He’s an indoors type but equally will laugh endlessly at the park with his sisters.

They’re all wonderfully similar yet so different. They can each love calm but also thrive in their own chaos - often at different times, of course.

It takes to unlearn and reinvent how you parent, when you have a neurodivergent child. You simply have to start from scratch and rethink it all. It can also take some time to be aligned in approaches.

My husband and I are two very similar people, but we differ too and it took us a while to be on the same page with how we approach things.

I think this, again, is another unspoken thing. You have to work that bit harder at supporting yourselves individually, each other as a couple and your family unit.

This is still something we are working on together.

How I look after myself

I’ve been reflecting on this a lot, especially recently.

I hit burnout. The endless toil of battling the system to get the right - and deserved - support for our daughter, on top of parenting three kids, the household, the mental load, work etc just got too much.

I went to the doctors and luckily saw a wonderfully kind GP who really listened. I let it all out and she immediately said how she simply has to take something away from me, and that the only thing she can do that with is work.

She signed me off for a minimum of six weeks, saying she’d likely increase this to 12 - she knew I would need more time and I now see that too.

In my first two weeks signed off, I became really unwell. Our youngest then got chicken pox followed by our middle daughter. But I am now managing to see what’s needed in order to keep me well enough to cope.

I’m starting to do more for me, including re-exploring my creative side.

I’ve never liked the “put your oxygen mask on first” saying. Whenever anyone says it, I nod politely but, in my head, I’m thinking: “Why on earth would I put myself before my kids, and how would I even do that?”.

I understand there is a healthy and unhealthy way of doing this - and my suffering and burnout isn’t helping anyone. I understand it on a deeper level now, but I still don’t like the saying.

I’m making more time to explore what brings me joy. Connecting with nature and being outdoors is a huge help. This is made much easier now that the sun is returning. I love the example this sets for my children, too.

The changes I’d like to see

I feel like I could go on and on here. Our tiring, rigid and outdated systems are not inclusive. They’re set up to support one way of doing things, one neurotype, and they don’t account for the true diverse nature of being human.

So many children, young people and families suffer and the way the systems are set up to ‘support’ ultimately just cause more suffering. So many of us are shouting this as loudly as we can and are being ignored or gaslit.

We are currently being silenced by our local authority through threats of disengagement with us.

They have decided our communication with them is too ‘persistent’. We’ve informed them of our rights to go to judicial review and they have perceived this as ‘threatening behaviour’ so have filed a complaint back to us saying if we don’t stop, they will minimise communication back to us.

For context here: the local authority has a duty to provide alternative provision for any child unable to attend school due to ill health as soon as this absence is or may be 15 days or more.

Our daughter has been unable to attend school since the start of January (a little before in-fact) and we still are not receiving a single bit of support.

We rarely get responded to on email, we can never get hold of them via telephone and our annual EHCP review was delayed by two months. When it happened, the case worker admitted to not having had time to review our case, so the call was completely pointless.

We remain professional in all our emails. The delays in responses and the lack of provision has continued to impact our daughter’s mental health and we’re still waiting for therapy for her, having been on a waiting list for over two years.

I submitted a formal complaint to them in February, with no acknowledgement or response, to date. It’s total disregard for an eight-year-old girl’s needs, for their duties and it’s again more attempts to silence parental voices.

The entire system needs turning on its head and totally refreshing; schools need to be less about attendance and grades and more about nurturing happy, confident human beings.

Get back out into nature, let children explore their calling. If some want to sit and learn by reading books and writing, let them. If some want to learn by getting messy outside and creating, let them.

Imagine how relieved our NHS system might be if our children were provided with the right care and education from an early age? I can guarantee you there would be far less burden on services like CAMHS.

I can totally see why families choose to home-educate, and now even this right is potentially being taken away, investigated as if it’s putting the child at risk, when we all know the biggest risk is the unfit school environment.

My hopes for the future

I’d love to share a poem that I wrote…

Whatever the future,

I hope that you know,

How I fought so hard,

To help you grow.

I hope that one day,

You can follow your dreams,

Stand up for yourself,

With kindness and ease.

I hope in the future,

The world’s more accepting,

Open to difference,

No more rejecting.

We’ll never be sure,

Not until we’re there,

So for now, I’ll keep fighting,

I promise, I swear.

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Follow Lily - @unmaskingus - on Instagram.

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