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.

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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.

Raising Two Autistic Children and How It Has Affected My Weight

I have never been super model material and that hasn’t ever bothered me. Prior to having children I was a size 12 and my weight wasn’t anything I ever thought about.

I am not prepared to say what size clothes I wear now because I know I am over weight and now I think about it a lot!

At nine months pregnant with twins I weighted much less than I do now, ten years later. The years have not been kind to me that way sadly.

As a new mother my weight was the last thing on my mind. It went even lower on the list when I told the health visitor I had some concerns about my son’s development. At 20 months I took him to see a paediatrician.

That day the paediatrician first mentioned autism and I went home and ate chocolate…because we all know that HAS to make everything better don’t we?

I had secretly hoped my sons struggles with speech, his delay in reaching milestones, his need for routine, his lack of social skills and his continuing rocking was a ‘phase’ he would grow out of. I was struggling with him outside of the house(and inside too where he would scream for hours on end) so I slowly but surely stopped going to anything with him. No toddler groups to be embarrassed at with my screaming child, no rhyme time at the library to watch other kids his age singing when mine could not say a word, and certainly no church when he would never settle in crèche.

The isolation started to affect my weight.

If you are not going out and meeting people what does it matter what you look like? I coped with the isolation by making poor food and drink choices.

Neither of my children were great sleepers. My daughter would only sleep if nursed from the breast and my son could stay awake all night at 18 months and still have more energy that a Duracell battery!

The lack of sleep started to affect my weight.

When you are tired your whole body is lethargic. You haven’t got the energy to cook and wash up so calling a delivery from a take away felt so much easier. It seemed like one less stress to think about in the chaos of life with young twins who consumed me all day and night. Sleep deprivation also meant that if I did manage a supermarket shop I would always forget essentials out of exhaustion. It took less energy to open a can of fizzy juice to drink than to remember how to even make a cup of tea. I was that tired!

Then as the children started nursery speech and language therapists, early years workers and educational phycologists became involved. The thought of people coming into our lives and our home brought so much stress and anxiety that I would cry into my cup of tea while munching on a chocolate biscuit.

Stress started to affect my weight.

The stress of finding a nursery place able to meet the needs of a non verbal child in nappies at three who wasn’t yet walking. The stress of putting the children in transport when neither of them could say if they were being treated well. The stress of feeling like I was always being judged because my children were not like others would make me want to reach for cake and fizzy juice while the children were at nursery or school.

Outside of nursery or school I had no other child care. My son was still screaming at 6 and beyond and the children’s insistence on rigid routines meant I could never ever be away from them. Going to the bathroom caused my daughter to have a panic attack and my son to scream! Everyday was a repeat of the previous one and outside of school we never left the house. I felt I was letting my children down.

Guilt started to affect my weight.

I felt I must be to blame for my children’s struggles since I was their main carer. I would read about autism being genetic and cry myself to sleep. I would read about early intervention and courses and wonder if I was doing something wrong since my child was 7, then 8, now 9 and still not talking at all. I felt guilty asking the NHS for nappies for my child as if I was somehow stealing from them. I felt guilt I was unable to work and pay taxes. I felt guilt at not noticing the autism in my daughter until she too was diagnosed a week before her 5th birthday!

I coped with that guilt with more take always, hot chocolate and crisps.

Food became my comfort when my world was falling apart.

I lost my self esteem, self worth and pride.

It’s taken me years to accept my children’s autism. I have walked through the isolation, the lack of sleep, the stress and the guilt and though things are not without difficulties, I am in a much better place.

Then one day I realised: if I could accept my children’s autism then it was time to wake up and accept how overweight I really was and do something about it.

Now I am slowly trying to lose weight. It isn’t easy though as my children are just as autistic as they always have been. They still only accept me doing certain things, rely on rigid routines, require a very high level of personal care and still struggle with sleeping a lot. I still don’t have child care and we have an abundance of appointments.

But I am making better choices. I am exercising when I can and not ordering take always like I used to. Change isn’t something my children like and it was so easy to settle into our unhealthy rut and stay there.

But for the sake of my autistic children and for my own health I am now slowly taking control of my weight.

I don’t blame my children for my weight issue nor do I blame autism. It was MY reaction and MY choices combined with the social isolation, lack of sleep, stress and guilt that having autistic children brought that pushed me to seeking support in all the wrong places.

I know it’s not going to be easy but one thing having autistic children has taught me is that even when progress is slow it is so worthwhile.

I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.

The Reasons I Don’t Like People (Thoughts from an autistic 9 year old)

Some people like lots of friends and team sports and doing lots of activities with others. I am not like that at all.

I quite like my own company. I don’t really like people at all to be honest.

I don’t like little babies. They make me felt helpless when they cry. When people cry it makes me feel very sad too and I want to cry so I want to stop them crying but they can’t tell me what they want so I can’t stop feeling sad. I also worry they might be sick. I hate sick. It makes me feel sick too. So I don’t like babies much, except maybe when they are sleeping or smiling or laughing but just a little bit.

I don’t like toddlers. They don’t understand personal space at all! They touch things that aren’t theirs and move things. They put things in their mouths and wander about and I can’t even cope with that. They don’t wait their turn, they try and do things that are dangerous and they throw tantrums when you say no. So I basically don’t like toddlers much. Plus they are still fragile and babies really but walk about like they are the boss which is so confusing! They look cute and makeup words but it doesn’t make up for the other stuff so I’m not a fan of toddlers at all.

I don’t like nursery kids or those who have just started school much either. They look at me like I am clever and follow me and copy me and I hate that! I hate being looked at. I hate other kids watching me. It’s like they think I am God or something. Just do your own thing please and leave me be. No you can’t play with me and no I don’t want to show you what I have. Just find other friends or go away. Don’t play football near me either or in parks. Balls are so dangerous in parks! See that age is so annoying!

I don’t like children my own age or a little older. The problem with that age is they notice my differences. They notice my brothers differences too and laugh at him. Thats so wrong and makes me cry.That’s all I want to say about that.

I don’t like teenagers. They don’t follow rules like they climb up slides you should slide down and show off to friends. They say naughty words and laugh at me and that is wrong. I can’t work them out much either as some times they can be really moody and grumpy and other times nice. Just be the same all the time please. Be the nice one actually.

Adults are not good too. They think they can boss children even when they are not my mum or dad. They shout, change rules, move things, walk over my stuff and sit beside me. They interrupt, have phones that they talk to all the time when I need them and forget my routines. It’s like they forget children even exist sometimes.

Old people are even worse. They talk when I am talking, touch me when I don’t want touched and ask me things that are personal like ‘awwww how old are you then?’ I mean what does it matter how old I am it’s not like you are buying me a birthday card is it?’ Plus they never have a clue about what I like and then just say ‘when I was your age…’ I hear that enough from my dad as it is! I know the world was black and white and flat and there used to not be iPads. I even learnt about Vikings and Romans at school but I live now so that’s what matters to me.

Another reasons I don’t like people is the fact we have people rules but it’s like everyone just forgets them. Isn’t there meant to be rules about who goes first? Some people just forget that queue rule all the time. Then there’s the talking rule thing. Mum says don’t speak to strangers but strangers speak to me when I am a stranger to them so they break the rule! Then I get told off for not replying…ahem…they broke the stranger people rule first not me! Then there’s the truth rule. Aren’t people meant to tell the truth? Even children break that one sometimes and I am like what? That didn’t happen like that why are you making that up? Remember imagination and make believe are for stories people not real life. Tell the truth. That’s the rule.

There is so many rules I wish people lived by that would maybe make me like them more. I’m just going to tell you them because this is my story and the rules say I can say what I want in my own story. So:

Give me space

Give me time

Give me peace

Don’t touch my things

Let me finish talking, writing, watching, listening or whatever else first before interrupting me.

Never laugh at me

Don’t stare at me, copy me or point at me

Don’t touch me

Don’t hurt me

Just let me be me and I’ll let you be you.

Then it doesn’t matter if I don’t like people because we can just do our own thing anyway.

That’s exactly how I like it actually.

The end.