Monday, 15 January 2018

Autism & Biofeedback

Doesn't Biofeedback sound great?

It sounds trustworthy and solid, something a white-coated expert, with an aversion to haircuts and fresh air, discovered after devoting his life to the pursuit of health (sidebar; I'm sure lots of scientists have lovely hair and I hope they don't send me letters coated in anthrax to express their outrage.... although, biological warfare in response to lazy stereotyping on my part would be a bit of an overreaction .... they could just write a strongly worded letter to the outrage column of their local paper.  Or get a haircut.)



Style challenged scientist. Fact.



Biofeedback is described as a system of learning to control autonomic nervous responses (normally not under conscious control, such as heart rate and body temperature) to improve health. That all sounds lovely, but it's hardly a new idea...meditation, mindfulness and Cognitive Behavioural Therapy have been all over this like a big, cuddly rash for years.  Biofeedback differs in that while you're learning to control your breathing, your physical responses are being monitored by reassuringly sciency electrodes that measure your muscle tension, heart rate and body temperature.  It's painless, drug-free and non-invasive so it won't hurt anything apart from your wallet. The notion of having hard evidence of our physical responses (and therefore future evidence of our improvement) is appealing...but it's really not necessary.  Anyone can learn techniques to help them calm down an over-excitable fright/flight response without needing electrodes humming on various parts of their bodies (unless that's your thing.... not judging) .


bad hair days are becoming a theme



The good part of Biofeedback is that it expects the client to actively participate in their own therapy, so you will learn relaxation techniques as part of the process.  Hopefully you can also learn to generalise your new chilled-out skills to situations where you are not dependent on being hooked up to the national grid for results. It's not much use being a laid-back bride of Frankenstein in a therapist's office if you're still having a panic attack in Lidl.

Where Biofeedback gets it's unethical groove on is in the promises it makes.  It re-creates the child-in-a-sweetshop scenario in that it's full of attractive promises... unfortunately those promises are nothing more than sugar coated junk that'll leave you poorer, sicker and a country mile further from real help than before.
One centre claims Biofeedback successfully treats (deep breath) ADHD, ADD, Anxiety, Autism, Bipolar Disorder, brain injury/concussion, cognitive decline (I'm pretty sure I have that), Depression, learning disabilities, migraine and PTSD (all listed in pleasingly alphabetical order for the pedants).  I'll take all you have of these, please.
Another site claims it can treat Autism by "establishing healthier brainwave patterns".  So now we have unhealthy brainwave patterns to worry about as well as whatever malady we began with.  This site also appears to  have discovered, without doubt, the causes of Autism (vaccines, inflammation, medication, diet, lifestyle, yawn... I really wish they'd get a bit more inventive and blame something fresh, like being bitten by plague-ridden monkeys or catching it off a toilet seat), so somebody notify the Nobel Prize people, we have a winner.

We love nothing more than to give up responsibility of our well-being to a comforting expert who has all the answers, in much the same way as a child believes their parent can magic away the monsters in the closet.  But of course in the real world, there's no replacement for hard work, tenacity and endless love and patience....  and we have to put on our grown-up pants and do this for ourselves. Working with your autistic child is a marathon (and mostly a fun one) and having a few electrodes jitterbugging his/her brain won't really make your life any better (unless it happens to improve your broadband signal... in this case, happy days!). 

When I first read about Biofeedback, I was hopeful that chocolate was involved somehow, but unfortunately the brown stuff it's composed of is not something you'd normally eat. 
Apart from learning relaxation methods, which you could learn anywhere else, it'll cost you and it could delay you seeking real help from a real therapist. 

Monday, 8 January 2018

Autism & TEACCH


"TEACCH!!!" is not a command yelled by an enthusiastic school principal on the first day of term.
Although many teachers returned to the classroom this morning wondering if hell is nothing more than an endless series of Monday mornings, they are a fairly professional lot who manage to educate our kids without needing to be roared at.

Shortly after my son was diagnosed, a teacher at a prospective school mentioned using the TEACCH model of education; being a confused, new inhabitant of Planet Autism, all I heard was "teach model" and thought well, obviously it's a teach model...this is a school...are there other types of models???
Before Professor Google had a chance to educate me otherwise, I spent the next few hours worrying about the alternatives;
Was there a 'prefrontal lobotomy model of education'?
A 'hold hands in the forest and sing Kumbaya model of education'? 
A 'lion-taming, fire-eating model of education' (this one would really suit my fearless son who has probably consumed pretty much everything else at this point)?
Luckily, the internet, and some deep breathing, convinced me that my son was not about to be inducted into a child-eating cult fronted by  lovely, well-educated teachers...after I warned my adrenal glands to behave themselves and sit quietly in a corner, I began to like what I was reading about TEACCH.

TEACCH is an acronym for Treatment and Education of Autistic and Related Communication Handicapped Children. It was developed in the 1960's by Eric Schopler and Robert Reichler.  According to Mesibov, TEACCH has two complementary goals; to enhance the child's skills and to change the environment to enhance learning. It is based on understanding the culture of autism, in which "characteristic and predictable patterns of behaviour" are interpreted by a "cross-cultural" teacher.  It is a system of structured education for autistic people which is not curriculum led, but child-centred.  It plays to the strengths of those on the spectrum, such as visual information processing, while addressing typical problem areas such as executive functioning, attention and communication. Typically, each child will have their own workstation designed to limit outside distractions, where a highly structured schedule of education is delivered. The structure allows the child to feel secure in it's predictability and helps them develop organisational skills (using visual schedules); ability to attend to lessons is enhanced by reducing distractions, sometimes by screening out neighbours, and by keeping the environment as minimalist as possible. Ideally the classroom should be divided into clearly defined zones, such as an area for group work and a quiet area.  Using visual schedules provides predictability and helps the child to prepare for change.  Ultimately this can help the child to work towards independence and to become involved in setting and changing their own schedule.

What's not to like?

But, I thought, the written word does not always translate neatly into our messy world.  For example, Hitler thought 'Mein Kampf' was a great idea, and was probably a bit piqued that it didn't work out so well for him.  Not that I'm comparing TEACCH to Nazi Germany, but entrusting the heart and mind of your child to another person feels like sending your baby off to Hitler Youth and hoping that it's more boy scouts than Nazi Party.  You're sending your child into an environment you know very little about, and have no control over, so if trust doesn't come easily to you, prepare yourself for some very entertaining 3am fretting.





Happily, my worries about lobotomies and right-wing politics were unfounded as my son has comfortably used this model for the past nine years.  He hasn't come home sporting a swastika or minus a slice of brain yet.

TEACCH, as part of an eclectic model of education, is ubiquitous in Irish schools, and for good reason; it does what it says on the tin.  It provides security, structure and a clear path forward.  Many of the skills taught are easy to use at home (such as scheduling, which my son uses to reduce anxiety).  There are some criticisms though; some people believe it creates an over-reliance on structure and that skills learned in such a controlled environment may be difficult to generalise in the 'real' world.  It has also been noted that the TEACCH centre in North Carolina does not seem to be producing empirical evidence to support its effectiveness.
I can only comment from a mother's point of view; that my son is continuing to learn, at his own pace, in a calm, creative environment.

I know and love enough teachers to know they are not angels, but they must have a tarnished halo and a few wing feathers somewhere to shine such magic light into my son's life.


Saturday, 23 December 2017

Autism & Exorcism

Humans are weird creatures;  we love to scare ourselves to death for entertainment and then wonder why we need benzodiazepines to calm our wired nerves. 
Movies about ethereal beings that enter a body and take it over have a particularly chilling fascination for us, and maybe we relate to it because mental illness and possession have always shared a bit of common ground .  I've yet to see a film where a nice spirit possesses sullen teenagers and urges them to have showers and tidy their bedroom - I suppose watching a kid using full sentences and doing all their homework isn't very entertaining.  Instead we have a dreadful fascination for the awful -  the voyeuristic thrill of watching something that terrifies us happen to someone else. So movies about evil spirits possessing otherwise good people and compelling them to commit horrible acts have put bums on cinema seats for decades....it's nasty and scary, but it isn't happening to us.

Mental illnesses and developmental disorders can present as if the person you once knew has been consumed by a malignant entity,  like a spiritual cuckoo ousted your baby bird out of the nest and replaced it with an unfamiliar changeling; the cuddly baby you had has stopped making eye contact and screams when you hug him; your teenager listens to voices from the TV telling him they are going to kill him; your sister crawls into bed and refuses to get up again, ever.  With no visible sign of illness or injury, and with the backdrop of oppressive religions,  it's almost understandable how our ancestors concluded that demonic possession caused such  radical changes (or even obliteration) of personalities.
But we're far too well educated to believe in that now, aren't we?





Exorcism is not something poor spellers do in the gym.
It is a recognized rite performed by the Catholic church, in which the subject may be restrained while the demon is confronted and ordered to leave by an ordained priest.
It sounds like something a good bouncer could perform at closing time, but some people take it very seriously.

Okey-Martins Nwokolo,writes that exorcism is still widely used to 'treat' Autism in Nigeria, but you don't have to travel to Africa to stumble across it.
Torben Sondergaard is a Danish faith healer who claims that Autism is caused by possession of demonic spirits and that he can successfully exorcise these in 90% of cases.  The remaining 10% fail because the subject lacked enough faith  (I must remember to demonstrate an appropriate amount of faith the next time I sit an exam...wish I'd known this when I was in college).  Sondergaard is a handy fella, as he also exorcises homosexuality (clearly they're a faithless bunch as well)....if my son grows up to be gay maybe he'll do a special rate for us?  It's worrying  that people like this have a platform at all, but he seems to have built up a small following, giving him enough oxygen to continue spreading his nonsense.  This means that there are people who listen to him, and it's really depressing to think a parent could look at their beautiful child (who happens to be autistic, or gay or whatever those busy little demons spread around in their fairy dust) and believe that they're not perfect just as they are.
Faith in exorcism reached a grim conclusion in 2003 when  an 8 year old autistic boy died after being forcibly restrained for several hours  during a ritual in Milwaukee.  The part of this awful story that haunts me most is that one of the people holding him down was his own mother. I can't afford to dwell on this for too long because it's too painful to even think about, but it's a grim reality check that some people don't remove their religious blinkers in their desperation to cure their child, until it's far too late.

Loving our kids unconditionally is part of the deal when we become parents. 
I can understand the seduction of exorcism; if you're religious and a priest tells you that a few prayers and a bit of holy water will cure your child, then maybe some parents might consider it.  But when restraints, abuse and even murder are part of the equation then surely basic humanity should trump  religious belief every time.

The only devil that needs to be exorcised is the inability to accept a child wholly as he or she is.
We don't need to cure Autism.  The only thing we need to cure is bad attitudes to it.

Sunday, 17 December 2017

Autism & CBT

Anyone involved with teaching or parenting is familiar with the concept of  behaviourism; learning that our behaviour leads to consequences is a bit crap (not looking before you cross the road can result in injury; overeating can lead to obesity; watching the YouTubers my daughter loves for more than a few seconds can cause me to wish I was born deaf while searching frantically in the kitchen for a spoon to scoop my eyes out with....that kind of thing).  Understanding behaviour can be a bit of a buzzkill, but is great for preventing death and the misuse of spoons.


post traumatic spoon therapy



One criticism of behaviourism is that it's like sticking a plaster on a severed leg - it's going to cover the cracks for a little while, but eventually the whole seething mess is gonna blow.   I find ABA very useful when dealing with the dangerous behaviours my son indulges in (examples; eating glass- crunchy, but not altogether good for his insides; bolting into strangers cars - excellent aerobic exercise but a paedophile's potential lottery win ) that needs to be addressed immediately. When his safety is compromised, it's a case of "son, every time you eat glass, Santy will have to spend an extra day in rehab" or "every time you smear shit across the bathroom wall, a tooth fairy dies".  Something surgical, with a twist of Catholic guilt, is a  pretty effective behaviour modifier.  But unless it is then qualified with cognitive reasoning ("Santy can only get better if he wants to get better" and "I never liked the tooth fairy anyway"), the behaviour change is shallow and meaningless in other situations.


Cognitive Behavioural Therapy (CBT)  is the smarter big sister of  behaviourism,  where a person's thoughts and beliefs are considered key in creating a meaningful and consistent change in behaviour.  It's like Parenting 101; if you punitively punish your child for hitting his sister without framing it in some context, then he'll learn to either slavishly obey your every whim to avoid further punishment, or he'll learn to be sneaky and  only poke her in the eye when you're not looking.  But if you teach him that  that there are healthier ways of dealing with anger than lashing out, then you're challenging his beliefs  and you can nail a nice, shiny CBT  plaque at your front door.  It's the easiest post-grad diploma you'll ever earn. 

CBT helps us to identify how unhelpful thoughts and beliefs influence our behaviour.  On the surface of it, it couldn't be simpler; stop thinking bad shit, job done.  But if you've ever had a day where you feel like a skidmark on  Lucifer's Y fronts, then thinking happy thoughts won't  raise your self-esteem from Swamp Monster to Shiny Happy Human in a few easy clicks.  It demands a lot more sustained effort than you'd imagine at first glance; if you can handle a side-order of head-wreck with your morning coffee, then CBT could be your steaming cup of psychobabble.  It works, but rewiring your brain can cause a few short circuits along the way.

I did a 12 week course of CBT a few years ago, when I developed an anxiety disorder as a two-for-one with my depression (there was a special offer in Psychos'R'Us and I just can't resist a bargain).  I was also fed up with talking to therapists about why my head was like a basketful of coked-up ferrets -  I already know the whys -  there comes a point when you want someone to hand you  a primed high explosive so you can dispatch those furry fuckers back to where they came from. CBT did not provide the immediate relief I would have preferred; it's messy, painful and takes time to process...but it did teach me skills I find useful to this day. 





When I read that CBT is useful for Autism, my immediate concern was "stall the wagon...my son can only reliably name two emotions (happy or sad....'happy', conveniently, means happy, and 'sad' is everything else...what a wonderfully simple world to live in);  so how can someone on the spectrum identify abstract feelings, relate them to their thought processes and then observe (and change) how all this ephemeral information effects their behaviour? That's a big ask for most of us, but for someone who has Autism, surely this is a bridge too far?
Apparently not.
A number of psychologists believe that autistic people, who often suffer from anxiety, can benefit enormously from CBT when it is adapted to a workable form for them.   Prof Connie Anderson  found that making the work more repetitive, visual and concrete makes CBT usable for autistic people,  and that allowing for movement breaks and sensory activities helps.  She  lists several randomised controlled clinical trials which show that CBT is helpful in reducing anxiety in autistic kids, so it's not like someone opened a box of crayons and wrote a few ideas on a used matchbox.  Some psychologists such as  Torry Creed believe the concrete thinking associated with autism can be used to the child's advantage, but notes that people on the higher functioning end of the spectrum may benefit more. 
There are enough academic papers written about how CBT can help autistic kids to convince me that that it's an area worth looking into if your child is suffering, but it makes sense to me that not every autistic child would be capable of engaging in it. 


Like everything though, CBT has limitations;
It doesn't stop you feeling the bad stuff...it just helps you to respond to it in a healthier way.
It  doesn't directly treat Autism, but helps manage the anxiety associated with it, so it happily falls right off the Cure Autism wagon.
It's hard; trying to catch your own thoughts is like nailing jelly to the wall, but a good therapist will help you re-learn that just because you believe you're the gherkin in life's Big Mac, that doesn't mean it's true.
You have to be relatively well to cope with it.  If you're chewing your own leg off because you can't eat or sleep (I lost a lot of weight last time I was unwell,  and would've made a great catwalk model if anxiety also made me grow three feet taller.  Missed opportunity.  Sigh), then you won't be able to deal with the mental focus that it demands. 
It might be difficult to find a therapist skilled in CBT and Autism, but if you don't look, you won't find.

It looks like Autism and CBT could be a very happy marriage.  Just add boiling water and stir, and you could have a less anxious child who will continue to to scale mountains without a worry in the world.







          

Monday, 11 December 2017

Autism & Homeopathy

A few weeks ago I listened to a man talk on the radio about his rapidly expanding business; he was selling bottled air.  I both marvelled at his earnest ability to pitch his product (he sounded like the kind of guy who could sell snow to eskimos), and at the fact that there are people in this world who will pay for what they've already got for free.  I enjoyed the view from my High Horse for a while, before a friend of mine pointed out to me that I sometimes drink bottled water.  Which I already have, literally, on tap.
So I learned two things; I'm as gullible as everybody else, and I definitely need new friends.






We're suckers for packaging.
A square of chocolate is a square of chocolate.  Wrap it in glittery paper, tie a ribbon around it and triple the price and now we have an arty piece of gastroporn.  But when you peel away the frills, it still tastes the same and still takes an hour of sweating on a cross trainer to work off.
Cellulite doesn't lie.

We know that bells and whistles are nothing more than sales trickery, designed to distract us from the fact that the actual product is banal; but we seem to be hardwired to bypass our common-sense circuits when faced with pretty eye candy.
I can't afford any moral high ground, as I'm basically a human magpie who's favourite colours belong to a palette called radioactive waste.  I have bought perfume that smells like a wet dog's undercarriage, because it came in a pleasingly glittery bottle.  As a teenager, it didn't matter to me that Michael Jackson had talent oozing out of his pores;  his poster was stuck on my bedroom wall solely  because he was so goddamn pretty.
Appearances dazzle us and short-circuit our logic; it's just the way we're wired.

Homeopathy exploits every one of these human blindsides.
Cures of every conceivable ailment are presented in jars that wouldn't look out of place in a hospital drug trolley.  The language used is just sciency enough to sound impressive, and incomprehensible enough to sound convincing.  They are sold on the shelves of reputable pharmacies, standing shoulder-to-shoulder with vitamins and analgesics, so they must be good, right?







But just because I stand next to Stephen Hawking wearing a Prada dress doesn't make me a supermodel physicist (reality check, you're much more likely to find me shovelling chicken shit out of a hen coop wearing my husband's fifteen year old fleece...this also doesn't make me a supermodel physicist, but at least we'll have eggs for breakfast).

Homeopathy has been around since the early 1800s, when a man called Samuel Hahnemann ate some tree bark to induce the symptoms of Malaria.  He believed that inducing a milder version of the disease would kickstart the body into fighting it,  echoing the beliefs of Hippocrates in the fifth century BC. that 'like cures like'.  Modern medicine later found that the tree bark actually contained quinine, which is still used today to treat some types of Malaria, so Hahnemann was literally barking up the wrong tree (I make no apologies  for the awful pun.  I find myself hilarious).

But homeopathy really gets it's freak on when it comes to doses.
Next time you're in Boots, have a look at a bottle and you'll notice figures like 2C or 30C.  These refer to how dilute the product is.  So, a 2C homeopathic remedy contains one part product to 100 parts solution...but we're not finished yet.  This is then diluted by a further factor of 100.  A 12C solution repeats this process 12 times.  It has been noted that this is the equivalent of adding a small pinch of salt to the Atlantic Ocean. Basically, what you're buying in those serious looking brown bottles is distilled alcohol.  It might make you feel better, but it won't cure your Autism.

It has been proved many times over (18,000 times over, to be exact, according to Smithsonian.com), that homeopathy does not work.  Then why does it continue to be so popular?  Is it's packaging really that effectively blinding?

Again, it's the old story of a simple cure being offered to desperate parents; there are oodles of websites that claim to cure Autism with homeopathy (you can check out here and here for examples, but there are loads more) and it beggars belief that they are not challenged for false advertising at the very least.
But I think there's more to it.
The homeopathic process begins with a visit to a qualified homeopath, who will do an initial assessment, take a detailed history, and prescribe a tailor made plan of treatment for your child.  It must be lovely for parents of autistic kids to find someone who will listen attentively to them; someone who will nod and make the right noises;  someone who makes them feel that their child is important, and not just another number taking up space on a multitude of ever-expanding waiting lists.  I feel the real success of homeopathy goes deeper than it's clever presentation; it taps into our need to feel listened to and valued.
Maybe that's not a bad thing.  Their products are no more harmful (or effective) that a bag of M&Ms, so if consulting a homeopath makes a parent feel a little less isolated, then maybe there's a place for them.  If this comes at the price of deception and giving false hope, though, it'd probably be wiser to give your child a few smarties and find yourself a good therapist.











Saturday, 9 December 2017

Autism & Bleach

Bleach is not something you would normally (or ever) associate with Autism.

Bleach is something I use to decontaminate the jacks, when the bathroom can only be approached wearing a military grade gas mask, while brandishing a recently updated copy of my will.  I have a husband and sons, so it is always prudent to prepare for the worst, but hope for the best.  They have an aim that makes me wonder if I should wash the ceiling as well as the floor, but life (and my arms)  are just too short for some jobs.
Bleach is something I accidentally splash on my new t-shirt (never my old one) while cleaning the offending bathroom, resulting in ruined clothes and murderous rage directed towards the stinky men in my life.  So it's not good for marriages, or motherhood, even if it does stop my house smelling like a pig farm just exploded over an open sewer.
Bleach is something people pay their dentist to apply to their pearly whites when they want teeth bright enough to use as a missile guiding system.  If you want to look like a nuclear bomb just exploded inside Tom Cruise's weirdly ageless smile, bleach is your only man...(this hardly needs saying, but  please only gargle domestos under dental supervision).  The most worrying thing about tooth whitening, though, is a future filled with drinking red wine through a straw; this feels uncomfortably reminiscent of drinking very nasty Bulgarian wine out of chipped mugs as a student (and loving it at the time...what was WRONG with me???).  I just don't believe there is any shade of white bright enough to compensate for a life devoid of a nice pinot noir in a glass that didn't start life as a denture pot on a hospital ward I worked on.
Not that this ever happened.






So, most of us know that bleach is like the  psychopathic second cousin we all have; the one who will diligently murder anyone who remotely threatens you, but who you'd be scared to take to a family wedding in case he gets bored and eats the guests as well as the food (we all have one of these, right?).  In safe hands, bleach can be used to maintain safety, and even health.  But in the wrong hands, it can be lethal.

The Genesis II Church was founded by a former Scientologist (not Tom Cruise...he's too busy having his teeth whitened) and has cast its shadow across the Atlantic to Europe.  Jim Humble, the 'archbishop' of this church developed a product called MMS (or Miracle Mineral Solution) which he flogged to desperate people to treat AIDS, Cancer, Malaria and Autism.  He preached that the sicker you got while taking it, the better you were getting, as your body was expelling toxins and parasites that caused your disease.  As with any quack remedy that promises a simple cure to a complex problem, people were drawn to it like bees to the honey pot. Or flies to horseshit.  Pick your simile.
What he neglected to mention was that the solution contained industrial bleach.   People either drank the solution, or administered it as an enema to their autistic children. In 2015, the Garda charged Patrick Merlehan (The 'bishop' of their church in Co. Kildare) with supplying MMS in Ireland.  He was fined €4000 and was told Santa wouldn't be coming this year because he'd been a naughty boy.
This year, a covert Facebook page was infiltrated by an Autism campaigner Emma Dalmayne , as she was concerned about rumours that MMS was being sold online.  She discovered a group of people bragging about how the skin rashes and bleeding their kids endure are all part of the healing process.  Photographs were posted on the page that wouldn't look out of place in a horror movie; of children's "parasitic" bowel movements that she believes are actually the lining of their intestines.  She liaised with the UK police, resulting in the arrest of the group's founder, and child protection agencies being involved.

But here's the kicker.
Even though the Health Products Regulatory Authority in Ireland have deemed the manufacture, sale and supply of MMS  illegal, the administration of it to children by their parents is not.  So if a parent is wily enough to get their hands on it, they can't be prosecuted for child abuse.  So far, our Minister for Health has declined to discuss the matter, despite pressure from lobby groups.
Are our autistic kids so unimportant that it's OK to abuse them?  Is it forgivable to ignore the suffering of kids who have no voice? 
Maybe it's nothing more than a sad reflection of our society's attitude towards those with special needs; that those who are nothing more than a drain on the system are not worth bothering over?

It's hard not to lose faith when there are people who will make MMS, and lawmakers who will do nothing to criminalise it's administration.  It seems our job as parents must inevitably expand into politics if we truly want to protect those we love.








Monday, 4 December 2017

Autism & Sound Therapy

It's hard to imagine a world without sound.
There are times when I would sell what's left of my soul for an absence of sound, such as at 4am, which my son considers an excellent time to rehearse The Twelve Days Of Christmas. He then usually capitalises on my awake state to warn me, loudly and often, that "the aliens are coming!"  In those wee hours, I don't believe that silence is golden.  I believe it is the closest thing to heaven since someone over-whipped the milk in a really cold room and invented ice cream.
And, so far, the aliens haven't arrived.

But mostly, sound is great.
We talk, listen to music, keep ourselves safe and use it to influence our mood.
Most of us are lucky enough to have functional use of our ears.  Besides being used to sport studs, hoops and complex pieces of jewellery you could scaffold a house with,  our ears  are a work of biological art.  They funnel various sound frequencies, which bounce off our tympanic membranes, where they transform into electrical impulses that travel to our brain to be interpreted as noise.  It's like a beautiful alchemy encased in a curiously disgusting wax....as if God was in a bit of a mood the day he engineered ears and said "fine, I'll give you sound, but I'm not making it easy for you...I'll also fill ears with vomit-inducing gunk.  Forever more, big brothers will pin their little sisters down, scoop gluey muck out of their blowholes and force them to eat it.  Think about that when you're listening to Prince shake his moneymaker, puny humans." (my team of lawyers  have strongly advised me to be clear that I'm not implying that my actual brothers ever did this to me in case they sue me...I'm just worried they'll make me eat more ear wax).


my legal team



We already use sound therapy all the time.
I have been known to ease the pain of  my poor ironing skills by listening to some very loud, very angry music, comforted by the knowledge that Lemmy never fretted over pressing a neat seam in his jeans.  I play calming classical pieces to my son in the hope that he will slow down sufficiently to allow dinner to becoming more about eating and less about hitting a moving target.  I use a playlist of arrhythmia-inducing tunes for my work-out to kickstart my heart  from it's usual state of suspended animation,  to a frantic rate that makes me glad my husband knows CPR.
So, sound is as handy as a small saucepan.
But it doesn't always work that way.

It is clear that many autistic people perceive sound in a disordered way.  They might crave painfully loud noise, or cry inconsolably when the washing machine goes into the spin cycle.  They may be unable to filter out what we consider background noise  and become overwhelmed and exhausted by a constant cacophony of nonsense.  They may be frightened by their lack of control over what sounds assail them and seek to control the uncertainty by drowning out all unexpected sounds with high volumes, or by covering their ears with their hands or with headphones.  So anything to help them deal with this would be very welcome.

But,  what is sound therapy, and when does it become Sound Therapy?

Dr Tomatis (probably the most well known advocate of Sound Therapy, or Auditory Integration Therapy) believes that autistic kids close down their hearing mechanism to shut out painful sound frequencies.  He developed a system of listening exercises in which the child listens to sounds of various tones and frequencies designed to re-open the entire auditory system.  But while there are many enthusiastic testimonials and some anecdotes that make very pleasant reading, there is practically no empirical research to prove that it helps Autism in any way.    In addition, it's outrageously expensive (think a new car and a holiday) and requires 30 -60 minutes of listening therapy each day.
I imagine child compliance would also be an issue.  My son was offered a trial of Auditory Integration Therapy years ago by our Speech Therapist, but the only real benefit was that he looked pretty damn cool rocking the headphones...kinda like a compact Fatboy Slim with behavioural issues.  He hated wearing the headphones, but we finally had to throw in the towel when he had a good gnaw on the walkman the ST loaned us, and then attempted to discover if you could toast CDs  (you can't).

My son accesses Sound Therapy at school, but  it is a far cry from the Tomatis method. Firstly,  there is a notable absence of chewable equipment and toasters.    Also, the focus is on relaxation and learning to quiet the mind.  He  loves it, and anything that gives him some mental and emotional rest is a source of joy to me.  So, if you're interested in Sound Therapy, make sure it is what you think it is.  It appears to come in many different flavours.
It seems to me that Sound Therapy is worth looking into, but is not worth spending the price of a house extension on;  your child might get more joy out of a James Brown CD.  But if you find something that makes your child's life a little easier, without emptying the piggy bank, then you have nothing to lose.


definitely therapeutic










Tuesday, 28 November 2017

Autism & Sensory Integration

Aristotle must have fallen asleep at the back of the class after the fifth sense was written on the blackboard; he spent his life teaching people about sight, sound, taste, touch and smell.   Today neurologists agree that there are at least nine senses, while some crack open the bottom shelf of the biscuit tin and say there are up to twenty one.  So, no Jammie Dodgers for Aristotle.
The ones we are most concerned with as Autism parents (as well as the original Famous Five) are the proprioceptive sense (or the sense of knowing where your body is) and the vestibular sense (or the sense of balance and gravity).  The other chocolate biscuits you can look up here, but these are the ones that have the biggest impact on our kids.


We perceive our world through a very narrow band of light waves, sound waves and electrical and chemical impulses.  Mostly, we assume that anything that falls outside those parameters does not exist (which is why early physicists like Galileo spent a good deal of his life under house arrest for heresy and witchcraft...if only he lived in the age of Facebook, he'd know that the universe revolves around grumpy teenagers who snapchat their dinner and then don't eat it, instead of all his solar system nonsense).  Luckily for us, there have always been pioneering souls willing to put their reputation, and sometimes their neck, on the line to explore what we can't normally perceive.  Because of them, we have electricity, microbiology and art.
We don't tend to think about how we perceive our world until somebody steps outside of our narrow limits and says "Hey!  I found quantum physics....and David Bowie."

The flip side of this is when our perceptive systems don't work properly and we receive, process and respond to the world in a disordered way.  The reality a person with Sensory Integration Disorder (SID) experiences is very different to the world we inhabit.  I'll leave the questions about how one person's reality is any more 'real' or valid to another's to the philosophers, because even though stuff like that fascinates me, it tends to hurt the cauliflower between my ears and makes me want to redress the balance by watching The Kardashians.  Cauliflower brain isn't very helpful when I have a gorgeous autistic son who approaches wall-bouncing with the gusto of a pro-athlete.
I need practicalities.

Autism and SID go together like ham and cheese in a giant  Special Needs Sandwich (can I stretch the metaphor to include ADD as pickle, and anxiety disorders as a difficult-to-digest gherkin?  I suppose I'm not trying to win a Booker prize, so I might as well.)


hungry???


I'm not saying that it's something that you'd rush out to the deli to indulge in, but for lots of us, the Great Sandwich Makers in the Sky misheard our order for a perfectly crispy Baby Roll crammed with cut-and-paste infants who are serene and sweet-smelling and definitely have better sleep patterns than gargoyles on amphetamines.
(disclaimer; please don't eat your baby...I'm only illustrating the point that we often don't get what we wish for, but sometimes it ends up being a lot more wholesome and fulfilling).

Sensory Integration Disorder happens when there is a problem along any part of our information superhighway.  Information from our environment might  not be received properly (either too much or too little data is perceived...lots of us can remember wondering if our kids were deaf, even though they may become distraught at the distant sound of a lawnmower); information might not be processed properly (an overload of competing sounds and images might, understandably, trigger the mother of all meltdowns); finally, incomplete or too much information can make it extremely difficult for a person to make an appropriate response (they know the Kardashians are hideous, soul-destroying creatures but don't have the motor skills to switch off the TV, or give their parents a clip on the ear for watching it).  You can click here for a properly grown-up description of SID that doesn't once mention trashy TV programmes.

According to Terri Mauro in the excellent 'The Everything Parent's Guide To Sensory Integration Disorder', no single cause has been found for SID, but it does seem to hang on the coattails of Autism.  She says that brain damage, sensory deprivation, prematurity and environmental factors may contribute.

My son is a (disarmingly handsome) Sensory Integration Spaghetti Junction. He eats firelighters, but not fruit.  His need for speed would alarm the most seasoned adrenaline junkie.  He can type 'Bob the Builder' in Spanish, Polish and Italian but can't tell me he feels hungry.  When our Occupational Therapist explained SID to me, all the dots connected and helped make Spaghetti Junction a little less knotty.


this makes me glad I like knitting



The tricky bit is that there is no 'one-size-fits-all' treatment for our kids as their sensory needs are as varied as their eye colour.
And how do you know your kid has it?  In our case, our OT spotted it and married together what appeared to us be random behaviours and symptoms.  We're also blessed that our son has access to an OT though school, and he has a Sensory Integration programme that is incorporated into his daily schedule. He has frequent movement breaks that enable him to go back to class and concentrate.  He can swing high enough to satisfy his need for balance and gravity, but with no spinning which makes him giddy and over-excitable.  Some kids need body brushing, squeezing, rolling, jumping, swimming, yoga, head massages, lava lamps, ...the list is as long as the needs that are uncovered.

Ideally SID should be diagnosed and treated by a health professional, but just in case your money tree caught a serious strain of Failure To Thrive  (dreadful illness, may also lead to a worrying case of Domestic Neglect where your house smells like an armpit and looks like it might be inhabited by a herd of Wildebeests), you can educate yourself by reading a few books and checking out some websites.  There is no real replacement for professional input, but as parents we instinctively work towards meeting our kids sensory needs anyway (hands up, who gives their kids uncooked pasta to crunch, squashes them with bear hugs that would normally put them on the radar of child protection services, or carefully cut the labels out of all their t-shirts?).  The book I mentioned earlier says that the tactile, proprioceptive and vestibular sense are the "big three" to work on, as these have a cascade effect on all other senses, and work on these will ultimately improve all areas, so it makes sense to start there.
For a golden few weeks, my son received Speech Therapy directly after having Sensory Integration with his OT, and the difference this made in his ability to focus and learn was astonishing.  This was short-lived, but demonstrated very clearly to me the value of Sensory Integration.
So, at the very least, SI is worth learning about, and is definitely worth investing in if you can shake a bit of gold from your money tree.











Thursday, 23 November 2017

Autism & Yoga

When I was a kid I thought yoga was a fermented dairy product for people with a speech impediment.  Anything that fell outside the wingspan of the GAA was viewed with suspicion and was not spoken of.   A regular Sunday for me in the 1980s was to go to mass, followed by by an hour of assaulting my friends around a wet field with a stick and what can only be described as a leather death-ball.  It wasn't a proper Sunday afternoon without blood loss, severed limbs and the reproach of dead ancestors who were shamed by my lacklustre performance on the pitch.
This is why I preferred to read books.


"stick a plaster on that...I've a match to play"



It took growing up and having children (literally) for me to learn that yoga is not the path to The Dark Lord, as the Catholic church sometimes preaches (although that would be awesome.... a bit of Satanism sounds like a laugh).
By the time three hefty babies had finished dancing hornpipes on my bladder, my midwife suggested that taking up yoga might be a better alternative to a future filled with industrial boxes of tena lady and a new postal address of 'PissPants, Co Monaghan'.


So, my battle-weary pelvic floor and I started yoga and have been big fans ever since.
And not just because I've saved a fortune on incontinence wear.
It's been a while now since I took a class, but it has taught me some pretty cool breathing techniques, (which is handy when a generous God threw in an anxiety disorder as a freebie along with my depression) .  It also helped me to be a little more bendy and more body aware. This has proved useful for someone who usually catches a football with her face and considers left and right  more a suggestion than a direction.
The fashion markets have not been remiss in jumping on the bandwagon and selling eye-wateringly expensive gear to look awesome in as you stick your leg up your nose and pretend you're a tree (although it's possible I may have been doing it wrong).  My signature  'overheated spud in camogie trackies'  look has not caught on, but I guess the world just isn't ready for me yet.



(actual photo of my 1st yoga class, complete with fetching moustache)



Anyhow, Yoga is great for improving posture, flexibility and for calming a mind filled with hysterically chattering  monkeys in a prison riot.

But can these benefits be transferred to help people with Autism?

I may have a slight bias here, but my son attends the best school in the world since Hogwarts (except in Abacas, Drogheda they do real magic), and yoga is a regular fixture in his schedule.  When I first saw it listed in his daily journal I wondered if they had special equipment to peel him off the ceiling first; or if they staple gunned him to a yoga mat and flanked him with bouncers the size of garden sheds to keep him in roughly the same spot?
But, no.  Apparently his teachers and SNAs have all sold their souls to the devil (bet they started on a bit of yoga at the weekends, thought it was a bit of harmless fun, and it was all downhill after that) in exchange for being so goddamn amazing, and my boy can now do yoga standing on his head ....(although that could be freestyle yoga).
Either that, or they're really good at hiding staple guns.

An interesting study into the effects of integrated yoga on Autism found that the kids involved demonstrated changes in imitation skills, and improvements in communication, functional object use, language, play and joint attention.  This study stretched over two years and the children progressed from disinterest and non-participation,  to engaging in a full 30 - 45 minute yoga session  The sample size (six children) was too small to apply to the general population, but my son's experience of yoga has also been nothing but positive.  He has learned breathing techniques we use when he is stressed, his co-ordination has improved, his body is becoming familiar with a state of relaxation, which is no mean feat as we navigate the choppy waters of puberty.

It'd be great to see yoga classes tailored for Autistic people in the community, because when my son graduates in five years, there seems to be huge empty sea devoid of anything fun or productive for him to enjoy.
Maybe some enterprising soul (who can tell their left from their right) will see the gap in the market and shine a little light into our kids' lives.





Tuesday, 21 November 2017

Autism & Hyperbaric Oxygen Therapy

Did you hear the one about the man who walked into a bar and said "my child is having Hyperbaric Oxygen Therapy for his Autism"?
Me neither.
This is not the working title of a Deep Space Nine episode.  This is a therapy that many autistic kids receive on Planet Earth to reduce (or even cure...that damned C word!) their autistic behaviours which some believe are caused by inflammation.

HBOT is another therapy promoted by the folks on Planet Biomedical.  These people seem to be more than a little obsessed with inflammation as being the root of all evil, and who knows?  Maybe they're on to something.
But does inflammation cause Autism, and if it does, then my simplistic brain is wondering why a couple of panadols won't reverse it?


Hyperbaric Oxygen Therapy  (HBOT...excellent acronym) sounds like Dr Who and Captain Kirk got really drunk, relied on the Catholic contraceptive of a Wing And A Prayer (patent pending) and ended up with this strange Lovebaby that frankly, frightens them a little.





My only brief nod and handshake with HBOT was as a nursing student in London, when a diver was sent to a naval base for decompression  because he rose to the surface too quickly.  I quickly forgot about it because I was far too busy eating out-of-date pizzas, going to dingy nightclubs and generally making a complete  show of myself (mercifully in the days before Snapchat). A couple of years ago I saw an article mentioning it as a treatment for Autism , and I thought that now that I'm a mature, Buddha-like adult busily dispensing pearls of wisdom to the world, that I'd have a closer look at it.
Never mind that the only thing I have in common with Buddha is his muffin top, sometimes it's healthy to shelve my default WT-actual-F position and investigate things a little closer.  I mean, if Edward Jenner can optimistically infect a child with smallpox to see if vaccines were a runner, then I can bring myself to read a few articles  (I suppose there's a fine line between being a medical hero and a murderer, and that line was a small boy who never heard of an ethics committee).


One Finnish study of 1.2 million pregnant women found elevated levels of cytokines (an inflammation marker in the blood) in those who went on the have autistic children, but we have to be mindful that correlation does not necessarily equal causation.  You might as well say that lots of autistic kids are born on a Tuesday, therefore Tuesdays cause Autism.
Another study looking at gene expression in autistic brains notes that "given the known genetic contributors to autism, inflammation is unlikely to be its root cause". 
So, the jury is out.  To the experts, it looks like genes and inflammation are in the mix, but a single root cause of autism is still a long way off, so suggesting a single therapy as a silver bullet is as cruel as it is inaccurate.  While it's fair to point out that inflammation may have a role in Autism, it's unfair and opportunistic to say that treating this possible element will recover your child.  Anytime a new developmental babystep is achieved in Autism research, parents hope and vultures circle.


But, if you decide to  give HBOT a lash, here's a few things you need to know about it.
It is promoted on the premise that it will deliver a high concentration of  pressurized oxygen to your child, which will reduce inflammation, and therefore reduce your child's autistic behaviours (bearing in mind there is no evidence that inflammation causes Autism, but you can always stick your fingers in your ears for this part).  Your child will need to remain in an enclosed cabinet for about 40 minutes, and he will need 10 - 20 of these sessions.  Each session will cost between $100 to $200, so I hope you're on good terms with your bank manager.  You will either need to travel to a centre, or you can rent a chamber for use at home.  As high levels of oxygen are flammable, electrics of any kind can't be switched on while it's in use.
So, as well as spending lots of time and money on an unverified therapy, I have one huge issue with it....how on God's green earth would you contain a human jitterbug in a confined space for 40 minutes WITH NO IPAD????  Photos on HBOT websites show serene children reposing peacefully in glass cases, like Snow White on just the right amount of Valium. 






A few years ago my son went through a "patch" of breaking glass (dropping glass from a height was particularly entertaining, and relieved us of quite a few ugly wedding presents now that I think of it, so every cloud etc etc) and he has become something of an skilled artist in this area.  I'm pretty sure he'd make very short work of a mere glass coffin, especially if it came between him and his My Little Pony DVDs. 
Nothing should come between a man and his True Love.

Potential side effects of HBOT include ear pain, blurred vision, fatigue, seizures, oxygen toxicity and respiratory disease.  Even though I'm dying to make light of lung failure in the name of curing your child from Autism, these side effects are only rarely seen if a session exceeds two hours.  In all likelihood, the only damage you'll see is to your wallet.
However, other unlisted side effects may include exploding glass cases, battered parents and a punishing orgy of My Little Pony episodes.


nothing could be worth this pain



One study showed that kids who received HBOT were less irritable and developed better eye contact after forty hours of treatment, but this relied on parental observation and I'm not clear if the kids were receiving any other therapies while this study was carried out. 
It's one thing for a parent to note that their child seemed to be in better form after receiving HBOT...it's quite a Herculean leap to decide that it also magically reduced inflammation, which magically caused Autism. 

If at any time in the future there is repeatable, reliable evidence that HBOT helps any aspect of Autism, I'll be the first Mammy requesting unbreakable glass and a chamber lined with Pinky Pie and Rainbow Dash posters .
Maybe with some back-up Valium in my handbag....hey, if it's good enough for Snow White...












Tuesday, 14 November 2017

Autism & Chelation

Do you ever have a day where you feel like the Michelin Man's fat, spotty sister with a personality disorder thrown is as a freebie?
Course you do.
Y'know those days where you load all your symptoms onto the internet and it cheerfully informs you that you have cancer, Alzheimer's Disease or that you're actually already dead but just haven't noticed yet?  But when all your vague maladies don't add up to an abrupt cessation of life, the wise old internet (in the same vein as a Doctor telling you you have a virus when she wants you to shut up and go away) will often diagnose an overwhelming case of toxic overload.  In fact, it doesn't know how your putrid body hasn't yet succumbed to to the awfulness that is crawling around inside you.  Your intestines are lined with bad bacteria, chewing giant holes through your mucosa so that poisons can bubble freely into your blood.  Your kidneys have filtered so much mercury and lead that they glow in the dark.  Your liver is weeping in the corner where your spleen used to be, because it withered up and died years ago.
In fact, you are more toxin than person.
So, you started off feeling a bit blah, and now you're a mobile poison factory living on borrowed time.



"i was only having a fat day"




But it's all OK!
The beautiful, clear skinned creatures beaming from the web pages can sell us any old crap, I mean products that will restore internal harmony and save us from our disgusting, imperfect selves.
Of course we could just eat better, sleep more and exercise more than our thumbs on the playstation to feel good, but that involves time and effort, and sometimes spending money is easier than changing our lifestyles.

Detoxing is big business.
Never mind the fact that our bodies usually do a perfectly efficient job of  waste removal (unless you're an unlucky soul with organ damage) - who wouldn't want to achieve a youthful glow with the energy of a Duracell bunny on acid?  If I have to scrub myself raw with Himalayan sea salt, swallow ominous sludge that looks suspiciously like swamp slime and take a truckload of supplements that  makes my wee green, then so be it.  Take my money and make me perfect!

The detox marketing machine relies on making us feel that we are less than good enough.
That's fair enough if we buy into it for ourselves.
Where it does get sinister is when parents buy into it on behalf of their autistic children and subject them to "treatments" that they can't consent or object to.

It's one thing giving your kids a few supplements, making them eat a healthy diet and maybe going mad and giving them a probiotic or two. 
It's quite another going down the road of chelation, which is a therapy promoted by people who believe that Autism is caused by exposure to toxins.

Chelation is a medical procedure first used in WW2 , when it was used as an antidote to chemical poisoning.  Chelation agents are  injected intravenously, or sometimes given orally, and bind with with heavy metals, rendering them harmless molecules which are filtered out of the body by the kidneys.  This was a huge medical advance and saved the lives of many soldiers.  But somewhere along the line, either a gifted businessman or an unquestioning believer decided to promote the message that Autism is caused by heavy metal poisoning (I'm really proud of myself for not including any AC/DC jokes here)...and that chelation therapy is just the thing to cure your child.

There is ZERO evidence that toxins of any kind cause Autism, and even less (is it possible to be less than zero??  In this case, maybe) that removal of "toxins" cures Autism.  Chelation therapy does nothing more than  prey on vulnerable parents who haven't yet accepted that their child has a life-long neurological condition that can only be improved with hard work and perseverance.
There are no short cuts.

Exposing your child to an unnecessary medical procedure is also not without risk.  While chelation removes poisons such as lead, arsenic and uranium, it also removes 'good' metals such as iron and calcium.  A healthy five year old Autistic boy went into cardiac arrest and died in 2005 after too much calcium was removed from his blood (the heart is like a battery that runs on charged ions of metals like potassium, calcium and magnesium).   How desperate to 'cure 'your child of Autism do you have to be to risk his life?

A much better approach to Autism is to change our perception of it as a disease or a disorder, as something that is less than perfect.  It would be more positive and productive to espouse the view of Steve Silberman in 'Neurotribes' that people with Autism are part of a spectrum of neurodiversity; that although our kids need special education in many areas that there is nothing inherently 'wrong' with them.

A very good starting point would be to learn to ignore the marketing machine that insinuates that imperfection is bad.  In many ways, being imperfect removes the pressure to maintain a Barbie Doll (or Ken doll, don't feel left out guys!) facade and gives us the freedom to be creative and spontaneous (with the wiggle room that allows for mistake making).

Really,  the Michelin Man could do worse than have me for a sister.



"I'd kill for some wine and chocolate"







Friday, 10 November 2017

Autism & Medication

There can't be an Autism parent on this planet who hasn't at one time or another wished there was a pill that would magic it all away.





When you haven't had a solid eight hours sleep in a decade,  have the Gardi on speed-dial because you have a serial absconder, and know a worrying amount of ways to clean dried shit from the backs of radiators, a drug to cure Autism seems very attractive.

Of course, like an atheist in a foxhole, it doesn't exist, but medications to treat some symptoms of Autism do.

It's a very emotional area for parents to consider, as we not only have to deal with worries about side-effects, but we also have to acknowledge that our child needs more help than we can give.  But when we exhaust all other avenues when trying to cope with lack of sleep, aggression and overwhelming behavioural problems, medication is an area we have to explore.

Many of us are familiar with Melatonin (a hormone we should produce when it gets dark to make us sleepy) which we give our kids at bedtime to help them go to sleep.  We agonised over getting this for our son, but exhaustion eventually overwhelmed our reluctance.  Lack of sleep is a huge issue for many Autism families, ironically often more so for the carers then the child.  However, getting hold of Melatonin in Ireland makes the Trials of Hercules look like a few irritating jobs you could get done before your morning coffee.  We were lucky  that our GP was happy to prescribe it, but many insist on referring the child to a paediatrician, so many parents have to jump through a series of bureaucratic hoops before getting access to it (which is just what Autism parents love doing with all their spare time).  Here's the rub; in many other countries, you could walk into any chemist and buy enough over-the-counter melatonin to make Sleeping Beauty snooze through Prince Charming's kinda creepy kiss (who kisses a sleeping girl???  Makes me glad my daughter studies martial arts).  Maybe we're just a bit shifty and untrustworthy in Ireland?  After all our worrying,  Melatonin has been a huge success for our son, with no side effects on him.  It's worth noting that even though Melatonin helps your child to fall asleep, it doesn't actually keep him asleep, so 2am starts to our day are still frequent.  But at least this way we can be guaranteed a few hours of rest before the party starts.



Antidepressants are also sometimes prescribed to Autistic kids to help them cope with anxiety.  This hasn't been a problem for my son so far, but as I have a pretty blue Happy Pill with my breakfast every morning, I have a bit of inside information on the effects and side-effects of antidepressants.  Firstly, medication (in my opinion) does not cure Depression or Anxiety but is valuable in pulling you out of that awful dark pit just enough so that you are able to deal with therapy.  It would be very tempting to assume that by giving your child a pill that his problems are gone, but in my experience antidepressants are just the first step towards mental health and we need to be mindful that they may also need further help (like therapy appropriate to their cognitive ability, or an exercise programme).  Secondly, most of our kids will have difficulty articulating how effective the medication is so we need to read  their behaviour to inform us, and this can be pretty unreliable. Finally, there can be some pretty disturbing side effects (which settle after a month or so), like vertigo, insomnia and indigestion and again this could be a real challenge for our kids.  But all that said, when the benefits outweigh the risks, I would absolutely consider giving my son antidepressants if the need arose, if only on the basis that I know how much they help me.



not as much fun as wine and chocolate, but easier on the waistline



Antipsychotic medications are sometimes prescribed to autistic kids not for psychiatric reasons, but to help deal with aggression and hyperactivity.  I have no personal experience of these but they are a group of medications I would consider if I was living on lockdown because I was afraid my child might assault me or injure himself.  Possible side-effects of sedation or weight gain seem a small price to pay for safety.  Using antipsychotics for autistic kids does not mean that they are on a slippery slope towards mental illness  - they just help to level out their emotions in what can be an overwhelming world.  Parents worry that people will judge their kids for needing these drugs, but if they're making your kid's life better, then it's nobody else's business.

Going down the road of medicating our kids is a big deal.  It seems that even though there is nothing available that directly treats Autism, that medications used to treat other conditions can be helpful.  Certainly since my son has started using Melatonin, he is sleeping better, and I get close to feeling vaguely human some days.  Autism parents have behaviour-watching down to a fine art, so our kids are in pretty safe hands when it comes to keeping an eye out for side effects.  These medications won't make the Autism go away, but they can make the difference between enjoying a healthy, loving relationship with our kids or being imprisoned  in a fearful home.


I have heard that there are some very promising trials being run on mice, but unless I have given birth to a really large rodent (love is blind...maybe I haven't noticed?) I won't be placing bets that a single drug will be developed anytime soon to treat Autism as a whole.



it's normal for my son to be so hairy, right?


For the time being, treatment of symptoms is where we're at, and when it's done safely and is in the child's best interests, anything that can make life better is worth trying. 

Friday, 3 November 2017

Autism & Multivitamins

Many Autistic kids are notoriously picky eaters.  Because of sensory and maybe developmental issues, some kids may only trust white food....or dry food.... or food that doesn't touch any other food on the plate.  While this is  worrying for any parent, I'm going to cross a sexist and racist bridge (I might as well burn it too for the craic) by saying that this tips Irish mothers past the point of indulging in a Nice Little Worry into the realms of Losing Our Collective Shit.  Irish mammies like to feed their kids, and not just with three square meals a day (with snacks in between); if our kids don't finish a steaming mound of meat and two veg and lick the plate afterwards, we're torn between demanding an emergency appointment with a dietician, or contacting the undertaker because they are absolutely, definitely going to die.




 


My son doesn't eat meat.  Or veg (unless it's mashed bean and potatoes).  Or fruit.  He would happily subsist on gummy bears and Tayto, without a care in the world about a future filled with anaemia and osteoporosis.  He has challenged me to develop a niche skill, which is a curious combination of cookery and deceit, in which I add an extra egg or three into his pancake batter and blend frozen berries into home-made ice lollies.  Autism parents become so adept at problem solving that we could complete the Times crossword blindfolded while acing the Crystal Maze. Then we'd go home and make dinner.
But our ninja skills in the kitchen only bear so much fruit.  No matter how many sneaky teaspoons of milled seeds you hide in their weetabix,  when your child eats only four or five types of food, the opportunities for hitting their nutritional goals are limited.  An obvious way to try to correct this is to visit your local pharmacy to buy some multivitamins (I include 'minerals' when I say multivitamins but I'm a lazy typist).

I would warn you, though, to take a set of blinkers, a pharmacology encyclopaedia and maybe a wheelbarrow.






The supplement shelves in the chemist are terrifying.  If you want to experience an interesting case of vertigo compounded by a crushing sense of failure, try reading the backs of a few jars and have a panic attack about fish oils (will my child's brain wither and die without them?), trace elements (how could I forget about trace elements!) and just wtf is CoEnzyme Q???  Do I have the Recommended Daily Allowance (RDA...again, lazy) right for my child's weight?  Does he need extra because (as some websites claim) my child is riddled with toxins and inflammation and needs megadoses to do any good?  Does combining fish oils with a regular multivitamin come with a free liver in case my child goes into organ failure from overdosing on Vitamin A? 
A good marketing strategy would be to issue Autism parents with complementary Xanax while supplement shopping, or at least point them in the direction of a psychiatrist well versed in Post Traumatic Stress. 

Our confusion isn't helped by the many websites peddling mega doses of multivitamins at over $50 a pop because, as they say "it is entirely possible that taking supplements may improve the symptoms of Autism".  When you read through these sites it becomes clear that they use language that seems to be designed to avoid being sued; they seem to skate a very fine line between callously making a profit out of worried parents and making false claims that they couldn't defend in court.  My favourite was a product costing over $30, which they claim is designed to support the nutritional needs of autistic children... scroll down to the end of the page and in fine print is a disclaimer stating the exact opposite...that their products are 'not designed to diagnose, treat, cure or prevent any disease' (I cringe at the use of the word 'disease' but I suppose these people are not trying to write poetry).   Some sites tout their products by coyly avoiding the use of the word 'Autism' but imply it in their choice of words.  In the unregulated world of the internet, it seems that semantics are everything.

But what worries me most about these supplements, besides their ethics, is their safety.  We know that minerals and vitamins are good for us, and may even believe that if a little is good, then more is better.  But if you supplement, it's actually not that hard to overdose.  A few extra  micronutrients that your body doesn't need will just be hoovered up by your kidneys, making some very expensive urine.  But your body will hold onto others and can lead to pretty serious problems like nerve toxicity and liver damage.  Iron, Vitamin A and B vitamins are the most damaging culprits, and bearing in mind that one of the supplements I looked up contained over 3000% (yep, that's three thousand)  of Vitamin B12 RDA the possibility of doing harm is very real.


But we make life awfully hard for ourselves
If your child is eating a fairly balanced diet , then he or she doesn't need supplements.  Simples.
For the rest of us having a nervous breakdown over our kid's imminent demise, giving them a relatively inexpensive, broad-spectrum supplement won't do any harm.  The only conditions I would impose would be to not exceed 100% RDA of anything , and to be mindful not to accidentally double up on anything (for example if you give your child separate fish oils, they most likely contain vitamins that will be present in a regular multivitamin). 
It is easy to be blindsided by over-complicated jargon designed to extract money from us by working on our vulnerabilities; our visceral urge to feed our kids and help us survive as a species. 
But in the long-term, I don't believe the human race will thrive because you give them a supplement that sounds like something Captain Kirk would zap with his phaser on the Starship Enterprise. 
Have a chat with your pharmacist, keep your supplements simple and spend your change on a nice bottle of wine instead.