Ten Reasons Why Having Autism In The Family Is A Good Thing

Often, nearly always, in fact, when I mention autism, people do that head cocked to the side, “aahhh, shame” sad-face thing. The media has been helpful. People now know a little bit about autism. But the media likes a bit of a car crash and tends to put a totally negative spin on ASD. True: autism can be a bitch - there are a lot of bad bits BUT there's also a truck-load of really great bits and these hardly ever get mentioned. It isn't a death-sentence for a family. It doesn't mean that life will be filled with doom and gloom forever and ever. Yes - it's a massive challenge for any family getting to grips with the new diagnosis and the implications for the future. BUT the dust has well and truly settled for us now and there's a lot of super cool stuff about autism which I wouldn't change for the world.

Here are my top ten reasons (and there are plenty more than just these) why having autism in the family is a VERY good thing:

1)            My boys have taught me to look beyond the surface of things. To look at life from a different perspective. To see (and feel and smell and touch and lick) the wood from the trees. We took J to the London Aquarium and he lay down beside every tank and looked at the ripples on the surface from underneath – so beautiful and so easily missed when you’re looking at what you’re “supposed” to be looking at. Bus handle colours, lamp post numbers, road sign fonts,  tiny errors in books etc etc etc. Rich beautiful details.

2)            They have taught me that the social conventions that J can find so confusing and difficult, often just don’t matter. Life goes on without following the crowd. Without adhering to these, you can make yourself appear odd to Joe Public. But what is more important – worrying about what strangers/acquaintances think or nurturing and enjoying your family?  

3)            Sense of humour – seriously, autism buffs this right up!  Not always conventional or PC, but life is properly funny round here a lot of the time! There are some days where a GSOH is vital…this “mountain”, for example, carefully sculpted from J's mattress (the third this year).

4)          My kids have taught me that you sometimes have to give people a little more time to get into their groove. Sometimes you need to look deeper than your initial gut feeling about a person. People who are initially “spiky” and hard to get to know are often the ones that are really worth getting to know. 

5)            They've taught me to poo poo the “shoulds” and “musts” in life, i.e. “all children should go to after school clubs” or “all children must love parties”. Our kids have always kicked against both of the above examples – I had to stop and really ask myself why I was flogging this or that particular dead horse.... Can they live without learning to play tennis?: yes. Why do I want them to play tennis?: so that I look like a “good” parent... oh!  Ditto the party-attending. If you actually stop and ask why you're doing the things that make you really stressed, there are often some interesting answers.

6)            Happiness. I can honestly say that I am a very happy person these days. Autism is painful and unfair and shitty sometimes and that means that we have to look harder for those golden nuggets of joy before the shutters come down again. But it's always worth the wait and is all the more special for not taking it for granted.

7)            They’ve taught me that there’s always interesting new stuff to learn like the effect of stomach acid on a wedding ring that has been swallowed or that Sonic The Hedgehog is also the name of a gene on chromosome 7 of the human genome or some other video-gaming fascinating fact (thanks G!)

8)            They’ve taught me not to always focus on the negatives in life – the Super Nanny model of parenting and most Autism “programmes” are about “fixing” your kids and “teaching” them stuff. Seriously? kids are kids – they want to have fun sometimes. 

9)            We will never EVER get lost on the roads of the UK. J has an encyclopedic knowledge of the road systems, rail systems and tube maps. #useful

10)         Finally, they’ve taught me to savour life. To properly breathe in and cement those moments into my soul. Kids really really do grow up so fast. In the early years when autism felt like an inescapable quagmire of doom, I never thought I’d get to this point. But even then there were good moments – I just found it harder to see them. They were certainly there though. See? (this video was made about 6 years ago):

Noise Sensitivity and Autism

Remember when you were little, playing hide and seek with your friends? That giggly, bubbly, sweaty-palmed, shaky crescendo of anticipation when you were the seeker, knowing that any second one of your pals would burst out of their hiding place when you got really close and shout "BOO!" in your face at full volume. That big adrenaline hit of being jump-scared - magnified by the fact that you knew it was coming.... any second now... ooooh, not there..... heeee heeee heeee.... any minute ..... under the stairs?... no.... behind the curtaiBOOOOOOOO!!!!!! (cue hysterical giggling for 2 minutes).

Now replace the fun game with something that is life-threatening. You know it is life-threatening because your brain tells you so. Then take that same crescendo of anticipation but replace the giggly fun with fear. Terror, actually. You are now in full fight or flight mode. Your pupils dilate, your heart pumps, your muscles tense, a whole bunch of stress hormones have been dumped into your bloodstream and the only thing that is real to you is the anticipation of the impending threat to your life. Any second now...not now....any second....I know it's cominCASHIER NUMBER 4 PLEASE!!!!! Boom. (cue cortisol hit and J hits the floor of the bank in a faint)

Most people on the autism spectrum have some sensory processing issues. For J, the strongest issue by far is his sensitivity to sudden noise. Actually his sensitivity to the anticipation of the sudden noise. Tannoys/Sirens/Fire Alarms/Car Alarms/Church Bells/Lawn Mowers/Hoovers. You get the picture. It's rare nowadays for him to go the full faint - the situation above happened a couple of weeks ago for the first time in a while. But for J, the build up and fight or flight reaction is a very common occurrence.  Supermarket  and shop announcements carry a special fear for J - I always thought it was just the sound frequency, but I recently realised that it's also the fact that a disembodied voice is booming all around from every direction, when he's already on the sensory rollercoaster of colours/sounds/people/smells that is a supermarket.

For the majority of us, loud unexpected noises might momentarily make us jump, but our brains quickly rationalise and filter out the noises and we carry on without a worry. But if your brain isn't good at rationalising, your belief systems are hard-wired and as rigid as steel, your brain magnifies and distorts all noises and you have the memory of a computer, you're not going to brush yourself off and carry on as if nothing happened. You will develop a fear of that fear - that fight or flight feeling and you will never want to leave the safety of your home ever again.

So, what can you do as a parent? You know that your child is in agony - mentally and physically. The short answer is that I still don't know that answer. I sometimes feel like we've tried everything and nothing has "worked". If anyone has THE ANSWER, I'd like to know immediately please but, for now, here are some observations I've made over J's 8 years:

Things that didn't work:

Assuring your child that "it's ok, it was only a siren/alarm etc. It won't hurt you"

Utterly pointless. To them it isn't ok (rigid as steel - remember). To them it was unbearable and their system is reeling from the assault of fear and shock.

Trying to make sure that your child isn't exposed to these noises.

Impossible and counter productive. Believe me, we've tried! Yes, a parent's instinct is to protect their kids from harm  but there's always something (holiday in beautiful peaceful hamlet in Devon = happened to fall on the one week of the year that there was a bell-ringers convention in the tiny church - all day/all evening - argggh!) We started shopping online; avoided shopping centres, swimming pools - anywhere with tannoys. Basically by doing this we were buying into J's fear and confirming that his fear was justified.

Listening Programmes - Auditory Integration (weirdy loopy music programme to realign brain wirings)

Meh. Seemed to help a little bit while we were making J sit and listen through special (and VERY VERY expensive) headphones twice a day for half hour sittings. As soon as we stopped, it stopped working.

Ear Defenders and every other type of earplug known to man

Meh. If worn all the time, the auditory sensitivity can get much worse. They act as a security blanket now - J likes to have them near him at all times, but very rarely puts them on (and he's eaten 4 pairs - a whole other sensory issue there...)!

Thinking that the more you expose a child to a noise, they will eventually get used to it.

Rubbish (in my opinion). Memory of a computer remember? Each time they get that fight or flight reaction, the memory is logged for future reference, the belief that the noise is BAD is made even more rigid than the steeliest steel.

Things that have helped:

Medication. 

Yup. We got there after years of soul searching and resistance (from me). It seemed so wrong. But, when you've tried all else and your kid's quality of life is really suffering.... Basically, unless you've walked in our shoes on this one....Well, the tiniest dose known to man of an anti anxiety drug and the sun came out for J. For six whole weeks. Then the noise thing came back but that gap allowed us to change our ways (all of the above!) and to make some tentative headway (all of the below:)

Modelling that you, the parent, are fine with the noise

This is very different to telling your kid that he should be fine with it too. When a siren goes screeching past and J hits the deck, we don't "poor you" and "it's nearly gone" etc. We carry on with what we're doing and let J do his thing. Very gradually - over a good few months, J has developed a coping strategy of his own. He has discovered that if he shouts (the same phrase every time) really really loudly, the output he is making, reduces the input of the noise. This is a work in progress as it's not totally socially acceptable for when adulthood looms but J has discovered this on his own and it works for him for now.

Peer Pressure

J likes to follow rules. When he's at school (notsomuch at home!) he likes to get it "right". When all his peers are modelling that noise is not bothersome to them, J can now copy his peers and hold his reaction in until he gets home. And then explode and work through it in his own space. I think this is an amazing feat of bravery. This is one of many lessons that J and all people on the spectrum have to learn by rote - totally unnatural to them, but necessary for existing in society.

Accepting that even though J will never get used to sudden loud noises or the terrible feeling of fight or flight, he will find strategies to deal with his reactions to them. That's different to getting used to them. Hopefully, one day someone will develop something to take away this auditory sensitivity that so many people with autism struggle with. Hopefully they will hurry up with this.

Understanding that your child's reaction might seem strange to you but to them it is perfectly reasonable behaviour.

To you, seeing J passed out on the floor of a bank because he heard a recorded announcement, might seem odd. It was only a recorded announcement. To J this is the equivalent to you or I being in a catastrophic pile up on the M4. In his world this is as normal a reaction as your reaction would be to a car crash in your world. Understand. Don't fan the flames. Just understand.

J's Understanding of Autism

We talk about it a lot. He asks about it a lot. We've made him a book. He's learning that he's different. This is heartbreaking but necessary. He is also learning that there are "rules" to be followed in order to be part of life. I'd like to teach him that there are also plenty of rules to be broken but we're not there yet. Hopefully, he's also learning that there are a lot of people in the world who understand, who care and love and want to help him and everyone in the world with autism. My biggest wish for J is that he gets as much fun and enjoyment out of his life as he can handle. We're getting there... Actually, he's getting there. He is utterly amazing.

The Autistic Computer - straight from the horse's mouth

J is beginning to ask about Autism. He is beginning to realise that he has some differences. I've been writing him a book to explain Autism a little bit...more on that another time. Suffice to say that I've spent hours and hours on it - researching, thinking, wondering, trying to find exactly the right words. And then G (my 11 year old who has Aspergers), emailed me his take on Autism:

The autistic computer

The processor is for processing sentences and words – an autistic computer has a slow processor that doesn’t work too well.

The graphics card is for processing patterns and images – the autistic computer has a great graphics card that can process patterns really well.

The RAM is for remembering things – the autistic computer is amazing at this, it’s like a 64GB NSA level super RAM.

The autistic computer operating system is like the old MS-DOS – it works fine and understands but you need to communicate with it in a different way to modern computers.

The autistic computer works brilliantly, just a bit differently to a normal computer.

On being the worst mum in the world

There are so many things that I do wrong:

I smoke (but I really really really want to stop)

I drink wine to numb myself before the bedtime routine starts (but I try to have a couple of days on the wagon every week)

I swear waaaay too much and enjoy it sometimes (but not in front of the kids... often.)

I hid behind a door yesterday in fits of stifled giggles when J shouted "King Bursterds" at the spiders in Cut the Rope.

I do not want the school PTA ladies to be my friends.

I only floss once a week.

I haven't grown out of Drum'n'Bass yet.

My handbag looks like a tiny zombie apocalypse has taken place in there.

I've given up sending Christmas cards and forget most people's birthdays.

I don't suffer fools gladly - or at all, these days.

I don't have a fancy kitchen extension.

I sometimes only wash my hair every 5 days.

The list could carry on and on. Basically, I'm a bit crap. Not at all the type of mother that I thought that mothers should be and certainly not the Yummy type of Mummy that you read about in glossy magazines.

And then, oh good grief, then there are my many parenting downfalls and, yes, there's the Autism thing but, Hell's teeth, woman! I am guilty of the following crimes:

My children's diets are pretty poor - oh have I tried to make it otherwise to no avail - but have now given up. J eats pizza most days and G has chicken nuggets. I bribe them to eat fruit.

Yep, there's another - I cook them separate meals - mug!

Both boys' special interests are now computer-related and they spend waaaay too much time in front of screens.

I've handed over homework duties to Dave because I can't do either of their maths any more.

They do not take vitamins.

I let them wear odd socks and occasionally retrieve favourite clothes out of the dirty laundry for them to wear if I haven't had time to do the washing.

I'm lax about making them wash hands before dinner unless totally caked with mud (for lax, read "has given up with this too"). 

Oh god - I don't even make J use cutlery to eat his pizza....!

I don't make them do any sports. None. At all. Apart from dog walking. Slowly, and often in different directions.

Agh! I didn't mean for it to be this way. Like most people, I knew exactly what type of mother I was going to be and exactly what type of kids I was going to have. Before I had kids. But, with the immortal words that tumbled from my lips (unrepeatable and not good) the moment I gave birth to my firstborn, that was all blown to a million pieces.  At that point the reality of parenting became very very real. And it's hard being a parent. Really hard. Whatever type of kids you have - Autism or not. I can't imagine anyone finding it a doddle - there's just so much responsibility and so many do's and don'ts and shoulds and must-haves and "What do you mean your children have never been on a plane?" and and and....

Breathe.

Breathe.

Breathe.

There.

And here's the thing, as I see it. The thing is that none of us are perfect. Even the ones who look perfect are not perfect (and I know for a F.A.C.T. that one of the PTA ladies used to be a crack whore.....or did I dream that...?). Anyhoo, we all choose which battles we want to fight. The lady who thinks it's more important to have a tidy house than spend time with her kids has chosen her battle. The mum who earns good money which buys her kids a great education has chosen hers. The mum who chose to stay at home rather than go back to work but can't give her kids material luxuries has chosen her battle. Nobody's right or wrong here, as long as we all do what we believe is right for our families. And OF COURSE we tear our hair out sweating the small stuff - it's our right as human beings and women to do this to ourselves. And it would be a world full of very VERY dull children - and very smug King Bursterds -  if we all got it right all the time!

Autism + Surfing = Happy!

I've been meaning to post this for several months now. I wanted to say something wordy and intelligent about it but, actually, it speaks for itself......

Despite the fact that it was blowing a hoolie, chucking it down with hail and was more than a little bit chilly, that smile is the biggest smile that J has ever smiled!

This was at Bantham beach in South Devon. J had a couple of lessons. http://discoverysurf.com/ The instructor showed J so much empathy and respect - his name is Harry. He is profoundly deaf but an amazing communicator - that lack of words couldn't have worked better for J. Words would have overloaded him in this extreme sensory situation. The sensation of catching waves was all that was required.

And just in case you didn't catch that smile, here it is again....!

How do you make it work with children with autism in the family?

I am often surprised by how differently other people live their lives. They can do some really nifty things that are totally alien to us. I'm not criticising or complaining - I am just genuinely in awe of the differences when I notice them. By "other people" I mean families who don't have autism as an ingredient. Neurotypical families. Of course I know that there really is no "normal" - life's rich tapestry and all that - but I am increasingly less aware of our differences unless I really think about them.

Here are a few of those things:

People can "pop" to the shops with their children without giving written notice.

People can attend parties and gatherings and their children merrily fit in with other children and look after themselves at these occasions.

Their children happily eat things that come from the earth or the tree.

Their children do after school clubs or go to childminders without it causing a nuclear explosion at home later.

Their children occupy themselves.

These families can go for a walk on a beach and actually keep on walking without stopping to examine every grain of sand or to fill their wellies with sea water!

These families can do a fun leisure activity that everyone in the family enjoys at the same time - together - all of them...

The list could go on and on. The fact of the matter is that these things seem like little miracles to me. I have no idea what "normal" is these days and, although there is no real "normal" there are a lot of societal expectations of children that are mostly do-able by "normal families": your child will ride a bike, have/attend and enjoy birthday parties, keep his clothes on in public, not make a "scene" after the age of 6?, play football, like going on playdates etc etc

And here's the thing: when you have one/two/three?? etc people on the Autistic Spectrum in your family, it is helpful to learn, pretty early on, that if you aspire to this type of "normal" then you will have a whole truck-load of unfulfilled expectations to bite you on the bum!

A wise woman recently said to me "Don't compare yourself or your family to something that is totally unachievable". This small nugget is possibly one of the most helpful things anyone has ever said to me and I realised that most of the times that I've felt desperate and heartbroken about my children's autism, I had been comparing my family to something that we can't be. That's not to say that we can't be amazing in our own way - my boys totally rock and I love them for exactly who they are. We are just never going to be a Neurotypical family.

In answer to the title of this post, I think that learning to discount the "normal" is the first and most important part of making life work for families with children with autism. Of course every family is different. Every autism family is different too so it's horses for courses here. I can only tell you about what helps us to make life work because some of it we've learnt the hard way and I wish someone had told me some of this when we started out on this journey.

So here goes:

Do what works for your family. Find your own pace of life - the pace that suits your children and you. As much as it would be lovely to attend all parties/weddings/bbq's/bar mitzvahs/concerts etc, if it's really not going to work for your kids, then find a way to do a little bit of it and avoid the rest. I'm not saying that all things that would be challenging should be avoided totally, but, if spending an entire day at a family wedding is going to be like Dante's Seventh Circle of Hell for all involved, then find a way to do a bite-sized chunk of it with your child/children that will be achievable and enjoyable. The worst mistakes we made early on were pretending that we could manage these things and causing J/G and us excruciating amounts of stress and a whole load of knock-on anxiety to boot.

I do sometimes feel that my little family are in one of those videos where we are operating at normal speed and everyone around us is speeded up. But that's ok because that works for us. I'm not saying that that doesn't scald and hurt sometimes, but the alternative - constantly running to keep up and causing my kids large amounts of stress - is much worse than the occasional (and getting rarer) feeling of being left behind by the world.

The next thing that I think is important is to always follow your gut feeling. There are so many autism experts and so much information and advice - a lot of it conflicting - out there. It can be so confusing. I recently saw a video on YouTube about the "biomedical" approach to "cure" autism. It all makes such perfect sense when you watch something like that. But when we looked into that approach a while back and discovered that we were going to have to part with hundreds of pounds a month and force 20 different food supplements into J, who is not into any unapproved food items passing his lips.... Well... gut feeling says "NO". My gut feeling says a big resounding "YES" to never letting my kids feel like they're "broken"; to concentrating on all the brilliant things that they can do, not the things that they can't do; to never saying never; to reading and learning all the time and staying open to suggestions. My gut feeling said "Bring it on" to filling my house with dogs and cats because they have such a positive effect on all of us (and because we are at home rather a lot - taking it at our own pace, remember!) My gut feeling (yes, it IS a big gut to have all these feelings!) was that money would be wisely spent on Occupational Therapy for J - as long as it is Sensory Integration OT (more in another non-gut-related post). Basically, unless your gut feeling tells you to gorge on gargantuan amounts of chocolate, it is probably correct.

Visuals Visuals Visuals! Autism is a visual thing. Spoken words can be overwhelming at times. We always use visual schedules with J even for the little bits of life that seem obvious. Now that J can read, we do written lists with little sketches to back them up. A Saturday visual might be: Play at home - At 10:30 get ready to go to the Library - Walk to the Library with Mum - Chose a book - Walk home with Mum - Have lunch - Play - At 14:30 take Claude for his walk to B Park - Home for Dinner, Play, Bath, Toilet and Bed. It works for us. More complicated outings have separate, more detailed visuals.

Remember the Importance of Solitude to people on the Autistic Spectrum. Solitude is a great healer. When the proverbial hits the fan, quiet time on their own, doing something that they like, is the biggest restorative. I found this hard to accept, initially. A Mother's instinct is to "fix" and hug and soothe. I now know that solitude needs to come before these other things.

Remember that all behaviours have a root cause. My kids don't wind me up for the good of their health! If J suddenly starts biting himself or me, for example, there's normally a reason. Last time it was a wobbly tooth that he didn't know how to get out.

Look after yourself! OoOh I am bad at this one. But it is so so important. If I am operating on one spluttering cylinder, then I am rubbish at being a mum to my boys. I need time to be me sometimes - loud music and dancing and just being without being needed. Vital. I've also found a brilliant counsellor who I can see whenever I feel the need to "explode". Sometimes, I only need to see her every couple of months. Sometimes, when things are all a bit much, I can see her weekly. I can't begin to tell you how much this helps!

Remember that even if something has always worked before, it can all change at the drop of a hat! It's really good to be prepared for this - it took me by surprise the first time. Things and routines that seem totally set in stone can suddenly become defunct. Something else will always come along though...

Active Acceptance - as opposed to Passive Acceptance. I think that's what mostly what I'm banging on about. By "Active" Acceptance I mean that we are constantly learning more about our boys' autism. Reading, researching, trouble-shooting when things go wrong, tweaking, encouraging, pushing their boundaries. We are looking to the future, but never saying never. Passive acceptance would be using autism as an excuse to shut down and blame everything on the big bad A.

So. How do YOU make it work with children with autism in the family? I'd love to know how everyone else does it. I'm open to ideas and suggestions......By "making it work" I mean "functioning"/"enjoying being a family"/"having a good giggle now and again"etc etc. We're still learning all the time - we most certainly don't get it "right" every day of the week but we're getting closer to finding out what we all like and what we all need to be the Hughes Family and we're doing ok!

Pearls of SENCo wisdom

Last week I had a meeting at G's school with his teacher and the Special Educational Needs Coordinator. Well, I say the SENCo - actually she is also the Deputy Head of the primary school that G attends and she is ALWAYS too busy to talk to parents. She bustled in and out of the room - making like a headless chicken doing very very busy and important things.

G is not statemented. He has Aspergers Syndrome and is at the top end of the spectrum. But he does have Aspergers Syndrome. He's on School Action Plus. Needless to say, the SENCo has been too busy this half term to actually have an IEP meeting with us. So G has soldiered on - mostly fine - but his needs pretty much ignored.

So I'd called the meeting to discuss which areas of G's daily school life could be slightly tweaked to prevent him from coming home totally overloaded by his efforts at school.

The teacher is ok - pretty experienced but, also pretty unaware of how AS can affect children like G who mostly manage to hold themselves together at school. Children like G who are academically very bright.

We chatted about how G HATES sports and PE at school. Most Tuesdays G tells me that he's too unwell to go to school. It's sometimes a real struggle to get him there. There's an external company who do the PE - young Sports jocks who mostly seem to dislike any child that finds it hard to join in with something that they don't fully understand the rules of and everyone's running around and shouting and making too much noise and it's all really unpredictable and aaaagggghhhh find it necessary to either shout at G or let him sit crying on the sidelines. Phew. Poor kid. The only funny thing is that the main shouty jock dude has a name that sounds like something that rhymes with beenis....! Not really that funny but G struggles to find the silver lining in "PE Hell", as he calls it.

I asked whether there might be someone to support G and anyone else that finds PE hard - someone to HELP THEM TO JOIN IN not to sit it out feeling like failures. 

We never really got to the punch line because in bustled the SENCo to give me her undivided for 3 minutes! I'm going to cut to the chase here - we discussed other stuff but we got to talking about the secondary school that we're applying for for next September. And here's what the SENCO!!!! said:

"I'm going to give you some advice, Mrs Hughes (whoop whoop let me take note of these pearls of wisdom, thought I). If I were you (hushed tones used here, bit of a drum roll...) I wouldn't mention that G has Aspergers on his application form - it would label him, lump him in with those children with actual Special Needs...."(Did I actually just hear that correctly, thought I).

Oh.

My.

God. 

I've suspected that they thought I was a hysterical, trendy-label-demanding mum who couldn't leave her child alone. And they, clearly, do! I said this to her:

"G has AS. He IS labelled with that by his very neurological makeup. We never want this to be an excuse but it IS a very real reason why he finds some things hard. What we want for him is understanding. Acceptance. Recognition of his great skills. Not to be treated totally differently but supported to achieve the same things he'd achieve if he had a normally wired brain."

What I actually should have said is unprintable.