The Difference Between ‘getting better at coping’ and ‘growing out of Autism’

My daughter is now more than half way through her primary school years and in a few short years she will face the transition to high school. She has come so far since the day she was diagnosed with autism exactly a week before her fifth birthday.

She reads fluently.

She writes beautifully.

She has a friend.

She talks in long sentences and can have a full conversation with me.

She is ‘doing well’ at school.

She no longer flaps in public, hides under tables or cries when people look at her.

She’s growing, maturing and slowly getting independent. So much so that an acquaintance recently asked me if she still had autism.

I wasn’t sure wether I should laugh or cry.

For anyone who is in any doubt: autism is a life long condition. You don’t ‘grow out of autism’ but you can learn to adapt and cope better. It is the latter that my daughter is mastering.

She has realised that others laugh and mock you when you flap in the school dinner hall so she soon stopped doing it. That doesn’t mean she doesn’t want to or need to she just knows it’s not the acceptable thing to do.

She has learned social chit chat enough that when people she is familiar with make small talk she no longer comes across as confused or ignorant. We have spent years working through different social scenarios to help her learn coping strategies. We have spent months on the same social story until she could reply with a simple ‘I’m good thanks’ to the question ‘how are you?’ As long as conversations continue as she has practiced she appears to be a fluent communicator.

She has learnt that not everyone loves to hear non stop information on the same subject. She has learnt that not everyone needs the same strict order of events as she does and that other children enjoy the change from routine even if she doesn’t. She understands what is expected of her and does her best to conform.

She hasn’t been cured of autism in any way, she has just learnt that to get by in life she needs to mimic non autistic people in order to survive.

As a society we are telling autistic people, wether we agree or not, that being non autistic is the best way to be. We start at a young age by placing as many autistic students, like my daughter, in mainstream school in the hope that other students will ‘bring them on’ and perhaps even ‘cure’ them. We may never actually say as much but we expect THEM to change and not the other way round. If a child is unable to hide their autism, mask their sensory issues, or cope with the demands of everyday school life we deem them a problem and educate them elsewhere like they have somehow failed.

My daughter has learnt to do what society expects of her. She mirrors her non autistic classmates in order to survive and so to onlookers it can easily be mistaken that she no longer has autism just because they can’t see her autistic traits any more.

You can not grow out of autism. It doesn’t happen. My daughter will one day be an autistic adult. She is proud of her autism. She knows she is autistic and she isn’t ashamed. Yet in school she could easily be mistaken as the same as her peers.

It’s called camouflage autism and it’s extremely common in school children and adults.

They can look, act and talk like non autistic people but that doesn’t change the fact they are autistic.

The difference therefore between getting better at coping and growing out of autism is that the first is extremely common whilst the second is in fact impossible.

Just because I have spent years helping my child to cope in a world that is foreign to her does not mean she is cured.

Just because my child can make it through a day at school, or an adult can make it through a day at work does not mean they are not autistic.

They are autistic people all around you, living in your street, at your work, in the shopping centres and driving on the roads who have all developed ways to cope and live in a world that is different for them. They may appear the same but they aren’t. Camouflage autism is all around us, if only we knew.

Think of it this way. If an Australian came to live and work in the UK and over time lost their accent, their Australian ways of doing things and blended into UK culture would we no longer say they were Australian? Of course not.

So why do we think because an autistic child or adult is learning to cope better that they are suddenly no longer autistic?

Maybe if people really got to know others and embraced autism more we would see that while at times it is admirable to want to be like others it is also wonderful to be your true self too: autistic or not.

When The System Damages The Very Children That Need Support

I am not sure what I thought would happen the first time I had an appointment to take my children to the paediatrician. I guess maybe some basic physical checks like height or weight or maybe some referrals on to other professionals or departments. I naively expected that appointments to help my children would indeed help them and not impact on their mental health years later.

That first appointment was my first introduction to the ‘system’. For anyone not familiar with how things work in the world of special needs parenting we are given appointments where we are expected to take our children along while strangers smile at them, perhaps say a few remarks to them, and then they are expected to sit quietly while the adults discuss them.

Even when my children were just toddlers this never sat comfortably with me.

My children may have complex needs but one thing is certain: they can hear perfectly well.

So for years I have taken them to paediatricians, specialists, therapists, neurologists, nurses, educational meetings, had social workers in my house and they have even been taken out of class at school to attend school meetings about them. In every single one of these situations, for years and years, they have heard adults discussing their diagnosis, their difficulties, and their struggles, all the time while they have had to sit there and listen!

Is it any wonder so many of our children with additional needs go on to be diagnosed with anxiety and mental health problems?

Why are we allowing children to hear such negative talk about them all in the pretence of ‘support’?

I tried to keep it positive but it backfired. By saying how well my child was coping and praising their achievements professional support got withdrawn quicker than the weather changed!

I realised I needed to be honest about the struggles my children had in order to secure the right support, but this has come at a high cost: my own children’s mental health.

Years of hearing everyone around them talk about them like they don’t exist, years of hearing their autism spoken about like it is a thing to be disgusted, years of all the adults who should be inspiring them criticising them instead, years of hearing their own parents highlighting nothing but their weaknesses takes a toll on them.

I hate what the system has caused.

We ought to know better. Research has proven so many times that children (and adults) need encouragement, positivity and belief instilled in them. They need adults around them to see them as valued, precious and wonderful. That IS how I see my children. Yet in order for me to secure any services to support them I am faced with an awful dilemma of having to talk about my children’s struggles while they are in the same room and can hear every word.

The system, designed to support our most vulnerable, is in actual fact making our own children ill.

Please don’t think I haven’t tried to protect my children. I have tried all sorts from technology with headphones, to arranging care so they can leave the room, to even asking for meetings and appointments without my children present. The latter very rarely happens and my children are not daft. They know we are talking about them regardless.

I understand there are times medical professionals, education staff and social workers do need to physically see my children but could this not be done separately to protect young hearts and minds? Apparently this is not common place at all, well at least not in my area.

So 8 years after that first paediatrician appointment what has changed? Well we have had literally hundreds of appointments. Both of my children have long lists of names of professionals who have met them, talked about them or treated them. I have drawers full of paperwork. I still have a diary full of appointments. Yet what is the hardest of all to cope with is that I have two children who have anxiety, mental health struggles and low self esteem and they are not even ten yet!

What concerns me more is that my children are just two of millions.

We must do something now to change this. Children should not be sitting playing while adults discuss their difficulties EVER. It is unprofessional, cruel and causing long term mental health problems.

What sort of society are we when the system mentally damages the very children who need our support most?

While you think about that I am busy trying to rebuild my babies.

I Will Never Walk My Child To School

I’ll never walk my child to school

I get to buy him uniform. I get to pack him snacks for playtime and fill a bottle of fresh water for him. I get to buy him a nice warm winter coat, new footwear, and a nice new bag.

But I’ll never walk my child to school.

I’ll never get to wave to him as he joins his line for the first time. I’ll never get to say good morning to his friends, kiss him goodbye at the gate, exchange pleasantries with other parents or pop into the office with his forgotten pencil case.

I wish I could walk my child to school.

It’s not the biggest thing to want. It’s not expensive or overly time consuming or rare to see. I just want to hold his hand or walk beside him in the morning and at 3 o’clock like other parents get to do with their children.

I never had it at the nursery stage but somehow that didn’t seem quite as bad. He’ll grow up never seeing my face just before he enters school to be away from me for six hours. Whatever his day was like I won’t ever be the smile that greets him or the hand that takes his as he leaves school behind for another day.

He’s still young and he needs me. I should be walking him to school.

There’s a wonderful school so close to us. Not too big, not too small, with such a friendly, welcoming ethos. I should have been buying burgundy jumpers to match his sister and seeing him laugh with friends in the school playground minutes from my house. When I sit in the garden listening to the children in my daughter’s school play outside I close my eyes and dream that my son is there too, kicking a ball about, chatting to friends, sharing life.

Instead I say my goodbyes at the front gate handing my son over to strangers who change every academic year. I strap him in a car seat, kiss his tender little cheek and tell him I love him. He never waves back. He rarely even looks at me.

I long to walk him to school.

We would splash in puddles. We would laugh when the wind blows our umbrellas inside out. I would listen intently as he told me about his day, his lessons, and who was star of the week. He would nag me to leave him at the gate instead of the line as he got older and we would get excited in winter walking in snow and making footprints. I know this because I get to do all of that, and more, with his sister.

Walking your child to school is so much more than just a menial daily chore. It’s bonding with your child, giving them priceless security and routine, its allowing your child uninterrupted special time to de stress and transition from school to home. It’s being familiar with their school, knowing the office staff by name,smiling at their teacher and having a chance to sort things out quickly because you are right there where you should be.

Is it wrong that I want that for my son too?

To know he has arrived safely, to walk home myself feeling at peace, to know where he is and that he is safe, to feel comfortable with the people who are looking after him and teaching him.

I’ll never walk my child to school and that simple, everyday loss is so hard to deal with sometimes.

My son has complex needs so has to go by transport to school many miles from home. I correspond with the school via short sentences in a diary. I don’t know what door my child enters the school or exits or if he even lines up outside. I don’t get to see his playground, his friends, or the staff. I have to assume he has arrived safely and he is well even when the weather is awful or I hear of accidents on the route. I can’t pop in with a forgotten snack or a form and even when I call them my voice or name isn’t familiar.

I wish it was different but it’s not.

Please don’t take it for granted when you walk your child to school. Some parents, like me, will never know that simple joy.

Today is just another morning that I never walked my child to school.

Adding Epilepsy and how it has changed things for my beautifully complex child

It’s quite a bizarre feeling when a medical professional finally tells you what your gut already knows. I mean if you already know it why does it still send your stomach into knots, make your head feel like it will explode and fill your eyes with tears? Maybe knowing something inwardly but hearing it outwardly isnt quite the same.

Whatever it is, the day I finally heard the medics say my son has epilepsy was just like that.

It shouldn’t have been a shock, but hearing it still made me numb.

I should have been prepared, but hearing the words still felt unreal.

I had already googled it so many times so why did I suddenly google all over again when I heard it ‘officially’, desperately believing that the information I read would somehow be different?

Knowing something inwardly doesn’t ever prepare you for hearing someone else say it after all.

So my son has epilepsy.

It’s not like this is his first ever diagnosis. He collects diagnosis like some people collect coins or stamps. He’s a beautifully complex child who already has a list of conditions that would scare even the monsters under your bed! Severe autism, severe learning difficulties, neurofibromatosis type 1, microphthalmia, Persistent Hyperplastic Primary Vitreous, optic glioma, global developmental delay and now epilepsy. It’s a mouthful. We tend to shorten it to ‘isaac’ and we encourage everyone else to do the same.

So here he is.

Isaac. My beautifully complex son who now has epilepsy.

Despite so much against him Isaac had been doing well, though I guess that always depends on what you mean by ‘well’. He was attending school, he was eating and drinking and, now and again, sleeping. He was happy, energetic and full of life…until March this year.

I didn’t see it coming. Yes he has had minor seizures, or episodes before. He has been having absence seizures for years and had EEG’s several times. He has, like all children, caught various bugs and minor illnesses but despite the fact he has no speech at all I could tell right away when he woke on the 4th March that something was seriously wrong. In fact I had to wake him that morning which I can’t remember ever having to do. He spend the day like this, only walking to have what I knew was some sort of seizure then sleeping again.

I sought medical advice. I was told it ‘probably won’t happen again’, except it did. Again and again in fact. Each time lasting longer, adding more adjectives to describe what was happening and scaring us all more.

Until finally in July this happened.

One minute Isaac was sitting eating breakfast, the next he collapsed unconscious onto the floor, his whole body tense and writhing and his arms and legs shaking uncontrollably. A three and a half minute tonic clonic seizure. A four hour sleep followed by a second three minute loss of consciousness, rigid body and shaking.

And so we added epilepsy to his complex needs. We added medication that week too.

Medication has been awful. If we thought the epilepsy was bad the medication was even worse! My son became a shell of his former self, lost deep in a world of lethargy, nausea, confusion and distress.

I was told ‘it will pass’. It didn’t.

So we stopped that medicine and started another. This time he is more alert but the lethargy, agitation and mouth ulcers have caused him so much distress. It’s utterly heartbreaking.

He’s not at school much.

He’s not doing much.

He’s not eating much.

He’s not really interested in much.

Life is one huge effort for him right now.

Adding epilepsy to my beautifully complex child has not been easy; thats an understatement.

And the hardest part of all of this is he can’t understand what’s happening at all and I can’t explain.

I have never felt so helpless as I do right now.