The Top Ten Offensive Comments People Have Made About My Autistic Family

I have two beautiful and wonderful autistic children. I also married a unique and handsome autistic man (though we were married 19 years before he was diagnosed). They all enrich my life but being different does seem to attract attention at times…and not always positive attention!

As a parent and wife I have had to develop broad shoulders and thick skin to many things people say about my family. I thought I would share the top ten most offensive ones and explain why they hurt so much and what you could say instead.

Firstly I want to stress that this is not to condemn anyone or make them feel awful. It’s about education and understanding so if you have said any of the following don’t feel guilty just endeavour to think and understand more from now on. Thank you.

1. ‘Will they recover one day?’

Why is this offensive? Autism isn’t an illness or a disease that gets better. It is a lifelong difference that should be embraced and understood. By asking if my children will recover you are implying they have something awful that needs treatment or therapy to get rid of it. You can’t ‘get rid of’ autism and you insult my family by implying or suggesting they should get over, recover or get better from their unique differences.

It would be better to say ‘Maybe they will change the world one day!’

2. ‘It’s that modern day ‘in thing’ to cover up poor parenting.’

Why is this offensive? You are saying autism is fictitious and that the unique make up of my children and husband which makes them who they are is a negative thing brought about by something I (or in my husband’s case his parents) did. Autism isn’t ‘new’ despite the fact we now understand it better and therefore diagnose more often. Autism happens in poor families, rich families, highly skilled parents, working class, the unemployed and the elite. You will find autistic children and adults in families with a huge variety or parenting methods so there is absolutely no evidence to suggest it has anything to do with poor parenting and suggesting otherwise implies ignorance.

It would be better to say ‘It’s more common in modern days but hopefully that helps parents feel much less alone than before.

3. ‘I’m praying for a cure.’

Why is this offensive? You are praying to change the very being of who my children and husband are! You can’t cure or remove the autism from them any more than you can take out their hearts! God made them exactly who they are and he accepts them and loves them. Why would God want to cure someone he made wonderfully unique?

It would be better to say ‘I’m praying for you as life must be a bit more difficult at times for you.

4. ‘It’s a slap he needs not a diagnosis.’

Why is this offensive? It questions my parenting and implies my child is unruly and undisciplined when he is autistic, not a brat. We say autistic people are very rigid but in fact society is very rigid in how they expect people to behave. Acting differently to expected does not mean my child needs corrected it means we need to be more tolerant and understanding.

Instead you could say ‘It’s understanding he needs and that can start with me.’

5. ‘I hope none of my kids ever copy yours!’

Why is this offensive? It implies my child’s behaviour or actions is something unacceptable to others. It’s usually said to me when my child is flapping, spinning, making repetitive noises, or not answering when spoken to by a stranger. The fact my child is non verbal seems an alien concept to some. There are so many amazing things both my children (and husband) do that I think if other children (and adults) copied their resilience, energy, enthusiasm, excitement and empathy the world would actually be a better place.

Please rephrase your comment to ‘There is so much my children could learn from yours!’

6. ‘Oh everyone has a bit of that really so what’s the big deal?’

Why is this offensive? By implying everyone is on the autism spectrum you imply my children’s and husband’s struggles are not valid and their diagnosis is worthless. In order to be diagnosed with autism you have to meet a high level of criteria and be assessed by professionals in a number of fields of expertise. If we were all a little bit autistic why would we bother diagnosing anyone?

It would be much better to say ‘Oh you have a diagnosed condition. That’s quite a big deal!’

7. ‘They never had that in my day’

Why is this offensive? It implies autism is made up. You only need to meet my family to know this isn’t true. Oh and for the record my husband was born autistic and he’s 60 so it’s ‘been around’ much longer than people think!

Instead it could be said ‘I know autism was around in my days too but unfortunately it wasn’t as well recognised back then.’

8. ‘I’m so sorry. That’s awful.’

Why is this offensive? You are saying that my children and spouse are so defected and bad that them being autistic is something to be ashamed and depressed about. There is nothing awful about autism. Don’t say you are sorry please. It is NOT a tragedy.

If you want to express love when someone is diagnosed please say something like ‘I’m so thankful for you. Being autistic doesn’t change you and I am still your friend.’

9. ‘Are you sure he should be in mainstream with normal kids?’

Why is this offensive? You just implied my child isn’t normal! You also implied my child has no right to be educated among his peers. That is dangerous, insulting and very very hurtful.

Instead be supportive and inclusive and tell me ‘I am so glad your son is in mainstream with my child. It’s how it should be and we all gain from it.’

10. ‘He seems fine to me!’

Why is this offensive? Because my son, my daughter and my husband are all fine already! They do have struggles (wether others see them or not), they do react differently to others sometimes and they may communicate in unique ways but they are perfectly ok too. Just because we don’t see someone’s struggles does not mean they don’t exist.

It’s much more respectful to say ‘You look well. I am proud of how well you are doing.’

The vast majority of people don’t mean to offend and I understand that. However a more careful choice of words and respect go such a long way.

Here’s a cute picture of the three most amazing autistic people I know. Why would anyone want to say any of the above about them?

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.

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.

Why I No Longer Tell People My Children Have Autism (even though they do)

I always thought I was a proud ‘autism mum’, unashamed of my children and spreading autism awareness wherever we went. It turns out I have actually been harming my children, and the autism community, without even realising it.

Let me explain.

It’s the school summer holidays and both my children are autistic. One of my children has severe autism. He has also recently been diagnosed with epilepsy. At 9 he has no spoken language so he often screams. He chews his cuddly toys, flaps, spins, claps and makes repetitive noises. His twin sister has anxiety, is selective mute, freezes if someone talks to her or even looks at her and is very much in her own imaginary world.

Yesterday I took them out ten pin bowling followed by a trip to a well known fast food restaurant.

When we arrived at bowling, despite pre-booking the lane online to save waiting, there was still a queue. My daughter panicked and became anxious and distressed, asking a million questions over and over again

‘What if it’s too busy mum and we can’t play?’

‘What if all the lanes are broken and we need to go home?’

‘What if there are no staff because they are all sick?’

‘What number lane did you book because I can see people on lanes and they might be on our one…’

And so on.

Meanwhile her brother was wandering, flapping, chewing the nose of his teddy and otherwise just acting happy and excited in line with his developmental age of around 18 months or younger.

This time last year I would have not stopped talking. In fact I would have been similar to my daughter who was saying so much out of sheer anxiety. Except my anxiety was different as I was much more socially aware and I felt I had to ‘explain’ my children’s unusual behaviours. I would have turned to the strangers behind me and said something about how both children have autism and find waiting difficult and my son can’t speak. Even if they were not even looking at the children or even bothered by them in any way I still told them anyway! I then would have made a big deal of announcing to the person at the counter how the children had autism and global delay and my son could not speak and this and that and…well more than she or anyone else actually needed to know!

I truly thought I was helping. I thought I was explaining behaviours and educating strangers. I believed I was spreading ‘autism awareness’.

Actually what I was doing was embarrassing my children, portraying autism as something that needed excusing or apologising for and exposing my vulnerable children to the world. Would I have felt the need to broadcast my children’s difficulties if they had been wheelchair users? Would I have shouted it to the world if they had a hidden genetic condition or a medical condition like diabetes? Yes my children were noticeably different but by mentioning that fact I was actually drawing MORE attention to it and not less. My anxiety was making things worse.

This year things are different. Naomi is asking question after question, Isaac is flapping, wandering away and chewing his teddies. They are openly different.

But now I keep quiet.

Now I no longer tell strangers my children have autism even though they do.

I am not ashamed of my children, neither am I embarrassed. Never. Not even for a second. In fact I accept them totally and wholeheartedly for who they are. That is why I stay quiet.

My children deserve respect and privacy. Society should accept them without any justification.They should not be accepted because ‘they have autism’ but because they are wonderful, beautiful and unique just like everyone else in life.

So yesterday we were issued a lane (number 19 if you really need to know) and I supported my precious children to take turns, use a support frame to push balls down the lane, and to watch excitedly as pins fell down (much more often when they rolled than when I did!). No-one stared, no-one asked questions or even really cared about us much and I never once told anyone my children have autism.

When we had had our ten games I helped them into the car and I drove to the nearby well known restaurant. I ordered nuggets and one ate just the skins and drank only milk while the other licked the table as well as his food! Still I never once mentioned autism to anyone. Both children clapped, flapped and made baby noises. I still never mentioned autism.

My children haven’t changed. I have.

Last night I apologised to both my children. I can’t say how much either of them understand how my own anxiety caused me to feel I had to tell the world about their diagnosis when in fact it was no-one else’s business. If THEY wish to tell someone about their own autism (I understand my son is likely to never reach this stage due to lack of spoken language and severe learning difficulties but he still deserves the same respect and I treat him as if he does understand anyway) one day that is THEIR choice. If my daughter (or son) wanted to wear clothing stating they had autism again that would be their choice.

But until then I have no right to disclose their diagnosis to complete strangers just because I feel the need to justify and explain their behaviours. Everyone is different and we should all just accept that without explanation or labels.

I am learning. I am not anxious anymore. So I no longer tell people my children have autism even though it is obvious they do.

It is making for a much more relaxed life for everyone.

P.s. They both beat me at bowling…I wonder how I would feel if they told everyone I was rubbish at bowling…

Blessed with a different child (A caravan holiday in peak season with a disabled 9 year old)

Back home we live in our own world: You go to school in a town far away and I take you to quiet places where few people go, like the park early in the morning or swimming much later after dinner.

Here we can’t do that.

Here it is obvious that I am blessed with a different child.

Caravan parks don’t isolate the disabled children like education does. Caravan parks don’t give you preferential treatment or appointments like the health service does. Caravan park restaurants won’t let you order mashed potato for breakfast like I make you at home. Here you are the same, but different. A bit like the caravans which on the surface all seem similar yet every single one is different.

When we arrive and unpack those around see I am blessed with a different child even before I park the car. There you sit in the back flapping with excitement and chewing on the nose of your cuddly toy. It’s not something 9 year olds do really and you look…odd.

I forget that others see you and stare. It makes me uncomfortable and reminds me why I don’t take you out as often as I should.

Is taking a disabled child to a busy caravan park in the summer holidays the right thing to do?

I think it is.

I take you to the on-site pool. Other 9 year olds are swimming unaided, playing with friends, drying and dressing themselves and doing hand stands in the water. You are lead by the hand by your mum, still using swimming nappies and a rubber ring and you giggle just sitting at the side dipping your feet in the shallow toddler splash pool. You are every bit as happy as all the other children, just in a different way.

I watch you and smile. Being blessed with a different child has taught me to enjoy your happiness every single day. As I look about I notice a life guard watching and smiling. Your different-ness has made them smile too.

I take you to the busy park. Other parents sit nearby chatting and drinking. I am lifting your legs, guiding you to the steps each time, and encouraging you down the smallest of slides so that children 7 years younger than you can take their turn. You make happy baby noises and wave your hands with excitement. Some parents move their children away, some children leave of their own decision but some carry on regardless. I am not embarrassed by my child but I am embarrassed at how others respond to him.

What’s so bad about seeing someone blessed with a different child?

Being in a busy caravan park with a child who is noticeably different to his peers has made me realise something:

My child is not the issue, the issue is how others respond.

I have not helped my son or my community by going to places others don’t. So from now on I promise to change that.

I am blessed with a different child and I won’t hide that anymore. If he wants to swim at peak times that’s where I will take him. If the park is busy what have I got to be afraid of?

I’m done with the isolation. If I can cope with a busy caravan park in summer season with a nine year old who can’t dress himself, can’t speak, can’t jump and still eats with his fingers then I can do the same back home. If he has a seizure in public so what? If he has a meltdown why should I apologise? He is a child just like any other child. He is beautiful, funny, full of mischief and entitled to play just like any other child.

I thought I was making things easier for my son by protecting him from comments and stares but in reality I have made both more likely because children like my son need to be seen more to be accepted more.

I am blessed with a different child and it’s about time the world saw a lot more of him!

I’m so glad I took him to a busy caravan park in the height of summer season. It gave me confidence and delight to be the one blessed with the different child.

Why Does My Autistic Child Have No Awareness Of Danger?

Earlier today I was walking home with my autistic son. The closer we got to home the less he wanted to hold my hand so, rather reluctantly, I let him go. We were on a pathway with no other way other than straight ahead and I could see our home right ahead.

Without so much of even a glance my son stepped off the path and ran across a road at the end of the street. Thankfully I live in a quiet street but my son’s lack of danger awareness scares me.

My son is almost ten but he still can not safely cross a road himself. He has no concept of waiting at lights for the green man, no idea of road safety, no idea that sharp knives should never be touched and definitely no idea about the dangers of water. He is very typical of most children with autism. My son has no awareness of danger which puts both him and others at risk continually.

But why do so many children with autism have no awareness of danger and is there anything we can do to help them?

There are very valid and understandable reasons why autistic children (and adults because for some this will be a lifelong difficulty) struggle with danger awareness. I will break them down and explain how we can help a child or adult learn danger awareness despite having autism.

1. Rigid thinking and lack of imagination.

This isn’t lack of creative imagination but more social imagination and understanding people and events that have yet to happen or be experienced directly. How this presents in daily life for a person with autism would be a very literally and black and white thinking along the lines of ‘since I have never been hit by a moving car it is therefore impossible that this could ever happen.’ They can not ‘imagine’ that anything other than what they have experienced could happen. Even if they have came across a danger before such as water that was out of their depth a person with autism may struggle to generalise that experience. So if they were out of depth in a pool they visited on holiday once they may only link the danger of deep water to that particular place and time and not generalise that danger to all pools or beaches.

How to help: Never assume someone with autism is incapable of understanding. Use their way of thinking to help them. For example point out speed limit signs when out and talk about the fact that the faster a vehicle moves the more dangerous it can be. Linking speed to danger is a very important message that can be generalised as it is very rule based.

With water point out warning signs that are often universal too and if there are any lifebelts around talk about why those are there and how this points out danger. Never assume anything so when buying fireworks take time to show the packaging to the child or adult and let them see or read the warnings for themselves if they are able to. Repetition is often the key for anyone but especially so for someone on the spectrum who may require extra processing time.

2. Uneven developmental profiling.

What this means is that while they may, on the surface, seem to function similar to children or adults their own age there may be areas like social skills or awareness of the world around them that they struggle with. It is very true that autistic’s see and experience the world in a very different (and wonderful) way but this may mean they focus on or obsess on things to the detriment of other skills. They may have a unique and amazing ability to tell you the make and model of every car that you pass, for example, but have no idea where the local police station is should they need help. It’s not that they are not observant just that they have focussed on something else instead, like how many bricks form a pattern on the next door neighbours wall.

How to help: Give them a reason to focus on what is necessary. So if you feel it would be worthwhile them knowing where the police station is explain why and have a visual chart with a photograph so they have to place the photograph either on the map or somewhere else to help them visualise what you mean by the police station and why it’s important to know where it is. Having visuals for traffic lights or other safe places to cross and looking for these helps too. In your home allowing them to stick warning stickers on things like sockets can help remind them of potential danger too. Visuals simplify, are easier remembered and are portable. I can’t recommend them enough!

3. High sensory needs (that can either overwhelm them or lure them to the point that everything else gets forgotten.)

For my son the lure of water is so high if he sees it he wants to touch it so badly that he can not see anything else going on around him. For others their anxiety levels can rise so suddenly when they have so many sensory stimuli bombarding them at once that they just have to run or drop to the floor and they blank out everything else in order to cope. This may happen suddenly in the middle of a road if, for example, they heard a dog bark and they are scared of dogs.

How to help: If you know somewhere will be noisy then noise cancelling headphones may help. Sunglasses may help with bright lights and having fidget toys may help redirect the need for sensory feedback too. My son has a massive lure (and fixation) on elevators so I allow him that ‘fix’ before I expect him to do what I want. I use ‘first lift, then shopping’ as otherwise he would simply run to the elevator while I shopped. It’s about working with and adapting to sensory needs rather than expecting them to suddenly disappear. Be creative and, if you can, even ask your child about what things stress them or what they enjoy and see if together you can find a way of supporting them.

Of course autism is a spectrum and for every autistic person who has no awareness of danger you may have another, like my daughter, who is hyper aware and as a result makes herself ill with worry at perceived dangers that are extremely unlikely. A shark eating her up at the local public swimming pool is hardly going to happen but she will fear it anyway.

Living with someone who has limited or no danger awareness (or even hyper aware and therefore highly anxious) is difficult. It takes patience, time and a willingness to adapt and understand to help teach danger awareness, but it can be done. I know for some children (and adults) there will be extra barriers such as learning difficulties and communication difficulties and some children will never reach a level of awareness or understanding to have any grasp of danger awareness at all.

I continue to do what I can to help my son learn road safety. While he is learning though I make sure to keep him as safe as possible. The more I teach him about what I feel he needs to know to be safe the more he teaches me about how smart and wonderful his way of looking at the world is too.

It’s all about balance. Independence verses safety, teaching but being willing to learn too.

Lack of danger awareness can be terrifying but with patience and understanding it can be taught. Never underestimate an autistic person’s ability to learn.

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!

Five Surprising Skills Autistic Children May Struggle With (and tips to help them)

Even before my children were diagnosed as being on the autism spectrum I could see that they were struggling with certain things. The truth of the matter is we all struggle with different things in life and we all have strengths and weaknesses.

When I researched autism I could see so many of the difficulties my children had fitted with the diagnosis like not giving eye contact, not responding to their names, having repetitive play or movements, struggling with communication (speech in particular), and not understanding the play and actions of their peers. However some of the things they struggled with seemed initially to be unrelated to autism but are in fact much more common among those on the spectrum than those who are not. The following everyday skills are not part of the criteria for autism and neither are they things that every child with autism will struggle with but if you have a child on the spectrum you may relate to some of these struggles with your child too.

1. Blowing their nose.

Over the years on autism support groups (online and in person), this seems to be a common struggle for many children on the spectrum. There seem to be a number of reasons why this skill can be hard to learn including understanding the concept, sensory issues and developmental delays. My twins are now 9 and still neither of them understand or have the ability to blow their own noses! For my son the whole ability to understand and follow instructions is a huge struggle and for his sister it’s much more sensory and developmental.

Some tips for helping your child (preferably when they don’t actually need to blow their nose so they can avoid the added grossness of snot!) develop this skill are:

* Using a straw to practice blowing so they understand the terminology,

* Encouraging blowing from the nose gently with the mouth closed.

* Making nasal sounds like ‘Choo’ from the nose rather than the mouth.

* Use a smell that could endure sneezing such as pepper (though always do this under very close supervision)

2. Tying Shoelaces.

It should be noted this skill is not usually developed by any child until around the age of 7 or 8 though for children on the autism spectrum is is often much later. This is due to so many factors such as fine motor control difficulties, sequencing difficulties, co-ordination difficulties and sensory issues involved in pulling the laces tight enough.

If your child is struggling with this don’t panic. Here are a few tips to help:

* Try showing them from behind them as showing on your own shoes will actually be a mirror image of what the child needs to do and this could cause the child to become confused.

* Use visuals to follow showing what the laces look like throughout the process therefore breaking down the language issue and sequencing difficulties.

* Watch YouTube videos of different ways to tie as there may be a way that makes it much easier for your child to grasp independently.

* Invest in self trying laces or elastic laces so that tying isn’t necessary.

* Buy shoes with Velcro or other type fastenings to avoid the need for shoelaces altogether.

3. Hand Writing.

Not every child with autism will struggle to have legible and neat handwriting. My daughter is a perfectionist and her handwriting reflects this, but for many children it is a huge struggle. Some of the reasons for this are lack of motivation, fine motor difficulties, sensory issues with holding writing utensils, processing speed and sometimes other learning difficulties such as dyslexia. Some ways you can help your autistic child with this include:

*Use technology to help but having apps that include letter formation and encourage the child to use a stylus in the same way they would use a pencil or pen.

* Make it fun by playing games or drawing pictures to take the pressure off the child.

* Allow the child to type instead of using handwriting for some tasks so as not to inhibit their creative expression too much by taking the onus off the physical ability to write and onto the actual content. (As adults how often do we actually hand write now?)

* Experiment with different media and materials such as pens, crayons, or paint, to help bypass any sensory issues.

* Stay encouraging! While handwriting is a skill we all need it is less essential than ever for future employability these days.

4. Continence related issues.

Many children struggle silently with continence related issues and many parents are embarrassed to talk about things like bed wetting. While some children, both autistic and neuro-typical, may sail through potty training many will struggle. It is ‘normal’ for many children on the spectrum to have a delay of some sort in this area either by not being developmentally ready in line with their peers, having huge anxiety about one or several areas of the task, having sensory issues around bathrooms or underwear, or struggling with the social awareness of it all. Don’t panic if your child is one of those struggling and don’t feel you are alone. Here are some ideas that may help, though if you feel there could be any underlying medical issues or if something has recently changed with toilet training in any way do seek medical support.

*Try using visual schedules outlining the stages involved in the skill from understanding the need, sitting on the toilet, cleaning up and pulling clothing back up. It may take much longer for someone on the spectrum to sequence naturally so be patient.

* Eliminate any obvious sensory issues or barriers by having something for the child’s feet to rest on while on the toilet so they don’t feel they will fall, empty any smelly bins, having the room calm and tidy and if using a public toilet try and find one without noisy hand dryers if this is a trigger.

* Go often and make trips more routine rather than waiting until urgent. Many children on the spectrum thrive with routine so having regular routine visits can take away stress.

* If your child is socially nervous having a card or code they can use to be excused from school lessons to go could make things easier than having to get the teacher’s attention and communicate the need verbally, all of which can be immensely stressful for some autistics.

* Don’t expect a smooth ride! Change in routine, high anxiety, family change in circumstances and even hormone changes can affect toilet training so much.

* Be respectful always. Don’t laugh at accidents or mention struggles in this area with your child as it could damage their self esteem.

5. Sleep.

No-one told me my son’s severe difficulties with sleep could in any way be related to his autism! A quick google or chat to parents of autistic children and it isvery obvious just how common sleep issues are for anyone with autism. These issues range from inability to settle to sleep, inability to stay asleep or inability to get back over to sleep therefore waking extremely early. Sleep is vital for our mental and physical health and lack of it can have significant effects such as memory loss, fatigue, ill health, poor diet, inability to focus, irritability, mood swings and weight gain. There are a number of key reasons why it is thought autistic children and adults find sleep a struggle and these include anxiety, sensory issues (around clothing, bedding, lights and noise), hormone issues, lack of time awareness and different bodily needs. My son can function very well on four or five hours sleep for example while I can’t!

Some ideas to help your child with sleep:

*Having a clear routine to help establish time and expectations.

* Using visuals such as a grow clock or nightlights.

* Physical and environmental factors such as black out blinds and toy free bedrooms to remove distractions.

* Background noise such a while noise (hoovers/fridges/freezers etc) which can be calming for some or perhaps quiet, peaceful music.

* Technology free time before bed to avoid stimulating the mind too much prior to sleeping.

* Some parents choose to use natural products like lavender oil or prescription medication from paediatric doctors such as melatonin.

These are just five things I was surprised my autistic children struggle with and I could have picked so many others like riding a bike, regulating their body temperature, and even dressing themselves.

Don’t underestimate your child though. If there is one thing my children have taught me about autism it is this: they may struggle in some areas but they excel in others and they bring me untold joy daily.

Have you related to any of this? Feel free to share!

Five Myths About Having A Non-Verbal Child

I am a parent of a non verbal child. He has always been that way and possibly always will. It’s our ‘normal’, so much so that I often forget when others look at my son or ask him a question that they have no idea he can’t speak. Sometimes I want to tell the world everything about him, because he can’t do so for himself. Other days I want to keep everything about him private and locked into my heart because…well mostly because people, sadly, can be very ignorant.

I know people don’t mean to hurt and they are mostly just curious and well meaning about life with my beautiful son but there really does seem to be so many myths about what it is like living with a non verbal child (or adult). Here are five of the most common ones I have had said to me:

1. “Your house must be so much quieter than mine!”

This one doesn’t offend me but it does make me laugh. Just because a person can not speak does not mean they can’t make noise! My son can scream so loud he frightens the birds away for miles. He makes a lot of noises both with his mouth and with his body. He cries, he laughs and he shouts…it’s just words he can’t make, not noise! He is at least ten times louder than his very verbal sister!

2. ‘You must have no idea what he wants then if he can’t speak?’

This one makes me realise just how much emphasis we seem to put on spoken language when, in fact, it is actually only a small minority of what we as humans use to communicate. I carried my son for nine months, when he was a newborn baby I interpreted his cries when he was hungry, tired or wanted comfort. Nine years later and I still know how to interpret his actions and needs. I can follow his eyes, see his face light up in laughter or he can lead me by the hand to what he wants. He is an incredibly gifted communicator, actually more gifted than many of us who have become complacent in our use of spoken language. He uses google street map to take me to the doctors when ill (you can read more about that here), he uses photographs of places we have been to to request to go again and he uses objects like the TV remote to say he wants to watch TV. He may not have speech but he can still get his message across. It is us who need to learn to listen not him who needs to learn to communicate.

3. ‘Give him time. One day he will come out with full sentences!’

I know people want to be positive and offer hope. I get that. I understand that people don’t understand severe autism, global delay and learning difficulties fully and base their experience mostly on what they have read or heard from the media or friends. People don’t mean to hurt me when they say this, but it does hurt. While my heart would love my son to speak to me suddenly in sentences, with the exception of a miracle, that isn’t going to happen. There are only three recognisable vowel sounds in his ‘vocabulary’ at almost ten. He has ‘o’ (sounded out like awww) and ‘mmmmm’ and ‘ahhhhh’ when eating but these are considered so infantile his expressive language has been assessed at approximately 6 months old. It has remained at this age for three years with no signs of any improvement.

As hard as it is for society to accept; there are people who never develop speech and remain non verbal all their lives. There is offering hope to people and then there is false hope. The latter can destroy and damage so much. My son MAY say some words one day but the reality is he is more likely to remain non verbal. I can accept that and I hope one day others will too.

4 ‘I bet he must be so angry and frustrated all the time.’

I can understand why people would think this. Of course, like any other person, my son has times of frustration and anger. Mostly these, like any other 9 year old, are actually because he can not have his own way rather than directly due to his communication struggles. He IS understood and he IS happy. My son has never known any different. It isn’t like he had speech, became reliant on it like us, then lost it. He has always been non verbal and he has found his own way to communicate on his terms. If people take the time to get to know him they can tune into his needs and wants fairly quickly. Out of everyone in my family he laughs more than any of us so his inability to speak certainly isn’t making him angry or frustrated all the time, anything but!

5 ‘That’s so sad. You must be so heartbroken all the time.’

While it may be annoying having your child whining or nagging for something when you are busy, or asking a million questions all the time, how would you feel if you never heard your child say ‘mum’? Of course I get sad sometimes, I would not be human if I didn’t. There are moments it catches me off guard, like when I see my daughter singing Christmas carols or when someone asks me what my son wants for Christmas and he can’t tell me. On the other hand I have become much more grateful for the times my son climbs on my knee at 9 to show me something on YouTube he likes, or the times he squeezes me hard and still wants me to lift him up even though he is almost my height. When he takes my hand as he climbs out the car or rests his head on mine, he doesn’t need words to say how much he loves me.

Yes a part of my heart feels the pain of never hearing his voice but I am anything but heartbroken all the time. I have a bond with my son which is like nothing else. Silence says everything when we are just sitting together and those moments refresh me whenever I need it.

There are so many more misunderstandings about children like my son. Sometimes I deliberately don’t tell people he can’t talk because they immediately seem to stop talking to him just because he can’t speak to them. That upsets me, but more importantly it upsets my son.

I have had other parents tell their children to avoid my son out of fear that perhaps his non verbal status is somehow contagious. People generally equate non verbal with ‘not with it’ which could not be further from the truth with my son. In fact if he ignores you it says far more about you than him!

Being non verbal is not holding my son back, society is.

It is ok to not know about something you don’t have personal experience of but please be willing to learn.

I am a parent of a non verbal child. I don’t need to be his voice because he is perfectly capable of making his own needs and wants known in his own way: He just doesn’t use speech to do so.

My friend and fellow blogger Chris Bonnello hit the nail on the head with this (to see more of his fantastic memes and blogs see http://www.autisticnotweird.com)