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.

Coping With Worry As A Parent To Children With Complex Needs

One Sunday three months ago things changed in my family. Up until then I always worried about my non verbal severely autistic son but it was mostly around his inability to be understood, his challenging behaviour and what his future might be like. That changed on the 4th of March when I found my son face down on his bed semi conscious. He has just had a seizure.

That day he went on to have three more seizures and he slept on and off all day, not eating but at least having small amounts of fluids. He was referred to neurology though he already attended. An emergency appointment took 8 weeks but finally on 23rd April he saw the neurologist and an epilepsy nurse. She wanted an urgent MRI as Isaac has NF1 which causes tumours to grow on his nerves and a previous scan had shown Isaac had a tumour on his optic nerve.

However before we even had a date for his MRI on the 15th May I had a call from Isaac’s school to say he had arrived sleeping and had been sleeping all day and semi conscious. I immediately knew he had had another seizure. He was not home ten minutes when his eyes began rolling, his arms shaking and his mouth foaming. There’s general vague worrying for your child and then there is urgent medical worry. Once again it was confirmed by a doctor he was having some sort of ‘episodes’.

A week ago today he finally had his MRI under general anaesthetic. It’s his fourth one and I am worried. If his tumour has grown then chemotherapy is an option. If the tumour is stable we could be looking at epileptic medication. The future is unknown.

Yesterday Isaac had another episode in the park. He was violently sick this time. His sister was terrified and it was very challenging getting him safely home.

Things have changed. While I try to stay positive and keep my faith it is hard not to worry. How do you cope with worry when your child has complex needs?

I decided to reach out to some friends to ask how they cope with worry.

Charlie (whose son was having surgery the same day Isaac had his MRI) told me: ‘I try to stay busy when he’s in surgery and I remind myself of the reasons we’re doing this and the benefits rather than what might go wrong. It’s always a tense time and even though I keep my mind busy I’m physically exhausted as soon as he’s back safely with me. (www.ouralteredlife.com)

Steph (who writes at http://www.stephstwogirls.co.uk) had this to say: ‘All I can really relate to for this is when Sasha was in hospital for those 10 days three years ago. She had to have a CT scan rather than an MRI but there was other stuff to worry about, like her leaky valves… I guess I just tried not to think about it but in reality what I did was suppress it all in order to be as matter of fact about it all with her as I could be and prepare her/keep her calm.’

Lisa said ‘I don’t always realise I have been worried until after the event and then it feels like a weight has been lifted. I’m a massive over thinker but tend to have a positive outlook for the most part. Sometimes things haunt me afterwards…post trauma?’ (http://www.alifelessordinarywithautism.wordpress.com)

Cara (http://www.lylasangels.co.uk) told me: ‘I don’t worry, it’s like i go numb and just go through the motions. Before Lyla’s hip reconstruction last year a friend asked me how I felt about it and I went through my spiel about knowing it was going to be a tough recovery etc and he said yes but how do YOU feel? And i didn’t have an answer because I had no idea how I felt, I felt nothing really about her actual operation. She’s been under GA a couple of times before that for mri’s and I wasn’t worried or anxious, just numb.’

Maxine (http://www.downinfrintplease.blogspot.com) told me how running helps her cope: ‘Oh absolutely the running is my saving grace. Especially because I am always trying to fend off injury so there is such total granular focus on posture, cadence, breathing and there is no room for anything else in my thoughts for that blissful time. The outdoor space is open overhead so nothing visually pressing down on my shoulders. I am utterly free from it all when I run, and ever so much more able to cope thereafter. I also don’t pressure myself for times or even to run all the time (I take regular walk breaks) so it is only about the freedom and ‘me time’. If I don’t have it I am a wreck from trying to keep track of everything. I can’t imagine coping without it.’

Gemma (http://www.islasvoice.co.uk) uses humour to cope with her worry. ‘I am mostly numb and I hide everything with humour.Most of the time I try not to think because I know when I do my worrying consumes every bit of me.Luckily we don’t have any health stuff to worry about.Instead I wonder why everyone has discharged a severely autistic child and she has no support. I worry I’m a shit mum. I worry I should be fighting more. I worry she’s not getting everything she needs and should be getting. I worry about what will happen when I’m no longer here. Then I start laughing and joking and in my head it’s all good but I know it’s denial. It’s how I get through each day.’

Sally, who blogs at http://www.hunterslife.co.uk told me how her son helps her with her worries: ‘If I start worrying about all the things that I should be worried about – all the unknowns about the future (or lack of it) – I drown. So I try to take my cue from Pudding more and just live in the moment. Not very good at it but it’s a heck of a lot better than thinking about the alternatives.’

Jeanette finds crochet helps: ‘I use distractions here. My brain over-thinks all the time so I either distract it with a bit of crochet or some music (can’t do the latter if not on my own). The “having to concentrate on stitches or you’ll screw it up” really helps, that and being around others who “get” if you might be quiet. (Www.autismmumma.com)

Julia confessed to how anxious and worried she gets: ‘Noah had 3 anaesthetics in under 7 months. Each time I carried him to the room and held him till he was under. I buried the fear deep. Buried the worry. He needed me to be strong. I focused on him as a patient sometimes, rather than my little boy. I put my nurses head on as such as it was the only way I could cope. As he slept I’d talk to my sister in law about him. She’s also a nurse and it helped me get through it all. I still have nightmares about those months. He only has to cough and burning anxiety starts climbing up my body.’ (Www.bloomingautism.com)

Lucy (http://www.revelationsofaslummymummy.blogspot.com) is much more pragmatic about it all: ‘Bizarrely, I worry about not worrying enough. I’m a very pragmatic person, have had mammoth amounts of trauma previously. Anyway, I just cracked on, partly as a survival mechanism and partly because I knew no different. For me, that works, but I always wonder if my pragmatism perhaps leads to complacency with Brecon. He seizes every day, and it’s just life. He bites, pinches and scratches me everyday, and it’s just life. I really really hope my approach doesn’t lead to him being less efficiently cared for or me being less proactive in terms of getting him what he needs.’

Finally Anne from http://www.fainbowsaretoobeautiful.com told me: ‘I worry all the time. I find the best thing I can do is try and ‘park’ worries for a while. Realise I’m worried about something but let it go with the knowledge I’ll return to it in a while – whether that’s a few hours, days or months.’

So we all worry. My coping mechanisms right now include swimming, praying and of course writing.

One thing I do know though is that worry won’t change anything. Everyday is a fresh day and a chance to start again. And right now everyday Isaac doesn’t have a seizure is a bonus. Thankfully we have many more seizure free days than we do seizure filled ones. As for the MRI…well I will share those results as soon as we know!

And Isaac? Well he is flapping, smiling and laughing through it all. He isn’t worried about anything at all!

When You Still Get Flashbacks To Diagnosis Day

img_0034Some days stay in your memory for a long time; the day you gave birth, your wedding day perhaps, or even the day you graduated from high school or university. Unfortunately for me one of the days that is stuck in my mind is the day my precious son was diagnosed with autism. I am not alone in that either.

I put it to the back of my head most days. I rarely read the report I was sent as it always brings me to tears. Time passes. My child grows and develops, but still some days I look at him and I am right back there in that waiting room when he was at just three years old waiting on his final assessment for a life long diagnosis. I knew before they said the words. I thought my heart and my mind were prepared. It turns out I was wrong.

I was utterly devastated to hear my son had autism.

People tell me I should not have felt like that. I have been told that he would pick up on my feelings and feel rejected, that autism is just a different way of processing things and that my son is still the wonderful boy he was before that day.

I still cried.

I cried for the child I thought I would have. I cried out of fear and worry. I cried at the thought my son would struggle more than I ever wanted him to. I cried that my instincts as a mother had been right all along. I cried not for my son..I cried for me.

Autism was something that would stay with my son all his life. That can be difficult to comprehend when your child is not even at school yet.

When he was diagnosed he was only just walking. He had no language and little awareness of the world around him. He didn’t know his own name. I had no idea if or when any of that would change. He was diagnosed and then we went home. No-one offered me hope.

It was a dark day.

I could take you to that building even now despite four years and five months having passed since we were there. I still see the waiting room in my mind, I can smell the sterilised toys and the wiped down plastic seats, I can hear the voice calling my sons name. It was like time stood still that day.

As my beautiful boy sat in yet another waiting room last week, on yet another plastic chair, I had a moment of flashback to diagnosis day again. Except this time I didn’t cry at the memory, it was more of a shadow in the background.

It has truthfully taken me many years to get to that point. Some days I hate even being referred to as ‘am autism mum’ as that just makes me think back to that defining day when they mentioned autism for the first time.

My son has autism. I can say that now.

Today I say that with pride and a smile. My son is still non verbal, still not potty trained and still requires round the clock care. He has no idea of what happened the day he was diagnosed and probably never will. That day in 2012 never affected him in any way, but it defined me as a parent.

Wether you have fought for the day for a long time, or came away from the appointment in total shock, diagnosis day is huge.

I know I am not the only parent who has taken years to process my sons diagnosis. I am not the only person to have flashbacks to the day they told me my son had a life long condition with no cure.

So what helped me the most to stop those flashbacks and memories from taking over? Hearing this brown eyes boys laugh, watching him smile and realising that he may have autism but autism in no way defines him.

We are doing ok. We are a team. I help him and he helps me too. He is replacing the memory of that day with better memories every single day of his life. I hope I get flashbacks to his hugs for many years to come.

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How do you respond when you hear your child has autism?

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How do you respond when you hear your child has autism?

We are all unique. It is what makes life interesting. Yet right from childhood we are expected to fit in and become the proverbial square peg in a square hole. We are programmed to react sad to bad news, excited and happy at good news and relief at hearing something is either not as bad as we thought or if it confirms what we have been expecting. As complex people we can even experience all that in just one go and often remain composed and professional on the outward appearance.

I have twice sat in rooms with various professionals and been told my child has autism.

How am I meant to respond?

Should I cry because my world has just turned my upside down; so many dreams I had for my child shattered as they have just been a life long diagnosis that could potentially limit them?
Should I sit in silence remaining composed while I am told all the deficits and difficulties my child has?
Should I look the person in the eye while they talk to me about their assessments that day and what other professionals have said about my child?
Or should I be relieved that my child just thinks a different way to others and count myself blessed he is just the same beautiful and loving child I brought in an hour before?

Am I wrong to keep my feeling to myself and keep the news confidential? What if I feel I want to share with immediate family only for support? Is it acceptable to update my social media with such news right away?

Should I ring a help line, search the Internet or immediate join a support group? Is there books I should real or pamphlets I take away with me?

What can I do about this? Should I be trying to change him or should I accept this? Should I be investigating private therapies or wait for further investigations or referrals?

What will this mean for my child’s education? Will this affect his health? Will he ever speak to me? What about the future?

While all this and so much more ran though my head on both occasions I heard myself thanking the person, shaking their hand and then finding my child to take them home.

I am never really sure if they expected me to cry. I wonder if they felt I was not hearing what they said. Maybe I even came across as uncaring or in denial? Would professionals have slated me for telling people, and even worse updating my social media that very day?

This week I heard more news on my children. Once again I found myself thanking the people concerned and shaking their hands. It seems the right thing to do. I have been programmed to be professional, not take up their time, and be dignified.

But we are all only human.

Never, ever let anyone tell you how you have to respond to that type of situations. It is ok to cry. It is ok to grieve. It is ok to retreat, tell the world and everything in-between. It is ok to feel trauma. It is ok to feel numb, or even relief.

Hearing your child has a life long condition with no cure is tough. Yes your child is still the most amazing, wonderful, beautiful child you took in to the clinic that day but things still change.

They change. You change.

However you respond when you hear your child has autism is the right way. There is no wrong way to respond. Even if you leave with a huge grin on your face dancing all the way home that is still ok. If it takes months of crying non-stop after the event that is also fine. You are all right. You are human.

In time how you feel changes. Then sometimes, like I had this week, you may have a co-morbid condition added on too. Then the whole emotional roller coaster can start all over again.

We are all unique. Your child is not a square peg but let me tell you something…you don’t have to be either. Be who you are. React how you react.

How do you respond when you hear your child has autism? There is no wrong way.