The CTFD Approach to Autism

Heard of the new trendy parenting method known as CFTD?  I find it works quite well applied to Autism, too.

 

Here's how I got into it.

 

It started with a couple of phone calls to some local charities.  They offer support for services and families, so I wanted to know more about what is available in the area that might suit the Offspring.  Mostly what I found is that there are a few different organizations, and they tend to each suggest you ring the others, at least if you have any very specific questions. 

 

The next thing that struck me was the tone of voice. 

 

"Are you receiving any support?" 

 

Said like that. 

 

Well, obviously I can't type tone of voice, but if you have a child with an autism diagnosis you've probably heard the voice.  Concerned.  Empathic. Not quite offering condolences, but almost.  I'm sure they mean well, and maybe lots of parents really find it shocking to be told they have a child who is always going to be different.

 

I do get it.  I've read articles like this one.  And I did struggle with the Tourettes diagnosis at first, because I didn't want my child to be judged.  In fact, I wanted her to be able to pass for normal*, but I have found my attitude changing about that, too.  But really, I have always hoped that I would never be disappointed about any child who is given to me.  How could I possibly want my child to be any different than she is?

 

I heard a story once about a mother who had a hard time bonding with her baby because she had been expecting a girl, and told the baby was a girl, and when he was born, well, they realised they'd missed a little something on the ultrasound.  I kept that in mind when I found I was expecting my first child.  I made sure I wasn't harbouring my own ideas about who the child would be, what they would be like - I know that is perfectly natural, but seriously, it is a little selfish, isn't it?  Right from the moment that little speck of life took up residence in my womb, I was offering hospitality, not creating my own person.  A child is a person, and a person doesn't belong to anyone but themselves, so who am I to decide what that person should be like?  Quite frankly, my daughter is a little spark of awesomeness in this universe, and I happen to have the job of looking after her while she is small and vulnerable, but who she is is not up to me.  How could I be disappointed? 

So that tone of voice irritated me.  It seemed to suggest that there was something too bad about the fact that I have an autistic child, like it's something to be sorry about.  On the other hand, the irritation did make me start to think about it, and examine just how I saw my daughter's diagnosis. 

Then kind of about the same time I started to think about that, I had some other conversations, with various medical and peri-medical professionals, about my other two children.  And the one common theme to all the discussions was the "don't worry" platitudes.  That really irritated me. 

First of all, the suggestion that my children's development is not something for me to worry my little head over, that I should leave that to their future teachers. 

There's a whole lotta things wrong with that attitude right there.

But then there is also the assumption that if I am asking a question about development, I must therefore be really worried about it.  Parents get a lot of "Of course it's only natural to be worried" lines.  Really, it's hard to get more patronizing than that.  But think about this: If it's ok to be different, if all abilities are accepted in our society, then why do people assume I would be worried?  In fact, the assumption that I am worrying about it suggests that I should be worried.  Humans are social creatures, we pick up on unspoken expectations and adjust our reactions accordingly, without ever even realizing it.  The implication is that if "there is anything there" then I would be right to be worried about it.

I'm going to be really honest here.  I think people who are into 'following' - but not playing - professional sports are weirdos*.  So how would you feel about it if you told me your kid was really into football, and had a favourite team and knew all the players, and I gave you that concerned half-smile with furrowed brows, and said with all the empathy I could muster: "That must be really hard.  Are you getting any support with that?"

*(Just kidding.  But it is true that I don't understand the attraction of spectator sports. And isn't it a little narrow-minded, after all, to think that if you don't understand it, there must be something wrong with it?  See the connection?)

So my kid is autistic.  She's going to need extra time and little more help learning certain things, and it's going to be tough.  Life is tough.  If she were more typical in her development, she'd have to take extra time and work extra hard to learn other things, and maybe she never would.  And maybe life would be easier, but maybe it would be less rich for her.  Autism comes with an intense awareness that most of us just never experience, and so can't even know what we're missing.  I'm not going to pretend it's all positives, but is anybody's life all just good and easy?  Is life about getting through as smoothly as possible, and making sure we hit all the milestones our peers do? Or is it about growing fully into the person we are, and living our (as in, our own life, as who we actually are in essence, not some cultural construct of what a person of our age/race/status ought to be) life fully? 

I don't want to make light of the difficulties and struggles of autism or of the problems that go along with it, but...

Is disability inherent in a person, or do they become disabled by the refusal of their community to accommodate and cherish them as essential members?

If we're going to talk like differences in ability really are just that - differences - shouldn't we drop the sorry attitude?

I'm not saying parents are wrong if they are upset by a diagnosis of autism.  It means a steep learning curve, altered expectations, and will likely call for a number of lifestyle changes - that's a lot of stuff to get your head around.  And there may be other difficulties that come along with it, and of course all parents do worry about their children being ok in life, and autism does give you extra of that sort of worries.  How to be the parent of a child who experiences the world in a  way you do not may not have been something you ever thought about, and it does take a lot of work that probably falls outside of what you imagined your job description would be when you signed up for having kids.

I'm just saying that maybe as a wider community we should try calming the f*** down about autism.

This person doesn't talk? No problem!  They aren't any less of a person for it - ask how they prefer to communicate.  And don't make the mistake of judging intelligence by verbal communication. Or depth of humanity by intelligence, for that matter.

This person likes to flap their hands and shriek when they like something? How beautiful is it to be able to enjoy something like that! Find a way to show them you share their happiness.

This person needs to rock back and forth and make odd noises when they concentrate? No worries! Respect their work and give them the space and time they need, like anyone else.  It's they way they are.

Kind of like how somebody might be stuck with a lifelong condition of having a Geordi accent.  Sometimes you might have to ask them to repeat something, and certain habits of speech might make you uncomfortable, or cause you to feel like they are not your kind of person, but they are no less a person, and with practice you can get to know what they mean.
(I'm not picking on this accent in particular, I just picked one to illustrate the absurdity of saying we accept everyone, but then acting like it's a tragedy that they're actually going to be like that forever.)

My child is always going to be autistic.  She is never going to be like me.  There are a lot of things she is never going to do.  But you know what?  She was never going to be just like me anyway.  (That's kind of the point of bringing new people into the world, IMO; you never know who they will turn out to be, but they're guaranteed to be unique and amazing.  If we let them.)  And there are many, many things she would never experience anyway.  Just like everyone else in the world.  But her life will be her own.  I'm not going to grieve over her being who she is.



*Edit: When I wrote "pass for normal", I meant it as in: Be able to walk down the street without attracting negative attention.  As in not getting mocked and laughed at by other kids in the playground or scolded by strangers for just being.  Gradually I came instead to wish that we will find the strength to hold her space and speak up to the ignorance and rudeness of others until the world catches up to the point where those people will be the ones who face public ostracism - for the choices they make, not for who they are.



 

A New Excuse for Parenting Failure?

 

Pathological Demand Avoidance.  Sounds like a "diagnosis" for "my kid won't do what he/she is told", right?  Like that "Attention Deficit Disorder" thing, that means "my kid can only pay attention to video games".

 

I'm betting we're going to start hearing a lot more about Pathological Demand Avoidance in the next few years.  I'm also betting we're going to hear a lot of snide remarks and outright sneers.  Probably for every mainstream article that gets published, there are going to be all kinds of comments about how things were "in my day", "before PDA", "when bad behaviour didn't have fancy labels".  Probably there will be all kinds of accusations about parents being let off the hook by getting a diagnosis that means their child can't help it.  A lot of people will suggest that PDA can be cured by "a good a$$ whooping".  And a lot of people are going to speculate and offer their best guess as to what used to happen to these kids with PDA before there was PDA.

 

Well, let me tell you what used to happen to "these kids". 

 

They got misdiagnosed.  They got treated as though they had something else wrong with them, usually several things, because none of the labels quite fit.  Only the management that usually worked for kids with those diagnoses didn't work, because they didn't have those things, but nobody knew what to do with them. 

 

They got put into residential schools for children with challenging behaviour.  Or taken from their families by social services because their siblings were at risk of harm from their violent outbursts.  Their families were torn apart.  Their parents' marriages fell apart under the constant strain of having a child that nobody knew what to do with.

 

Or they got excluded from school after school until they had nowhere to go, and one of their parents had to give up work and stay home to look after them. 

 

They became isolated, depressed, maybe suicidal, because they couldn't fit in and didn't know why.  They turned to self-harm. They regressed and retreated into stereotyped behaviours more commonly seen in Autism. 

 

Some of them got a diagnosis of Atypical Autism, which at least meant they could get some support, but still meant nobody understood them.  They had what kind of looked like autism, but "atypical", as in, they didn't even fit in with other people diagnosed with autism.  Others (probably depending on where they lived) got diagnoses of PDD-NOS - Pervasive Developmental Disorder Not Otherwise Specified.  One parent I knew had a paediatrician explain that diagnosis as being a medical term for "there's definitely something wrong but we have no idea what".  Diagnoses like that aren't very enlightening.  They don't really do much to help others understand how to help someone.

 

Undoubtedly some of those kids who had PDA before it was 'a thing' have a milder presentation.  They were able to live at home without damaging themselves, their home, or their family members too much, but couldn't handle school.  Failed, got kicked out or dropped out, or maybe held it together most of the time and got through, but with a heavy branding as the Bad Kid, the Troublemaker, the one that parents and teachers alike simply didn't know what to do with. 

 

You know what tends to happen to kids with milder learning and developmental disorders that go undiagnosed?  They tend to develop mental illness.  It's probably pretty hard not to get really severely depressed when you are always wrong, always bad, always unable to meet anyone's expectations, even your own, and you don't know why.  It's not surprising that people with untreated mental illness often turn to drugs to ease the very real pain.  It's also not really surprising that a majority of people in jails are thought to have learning disabilities.  Or that many of them end up being exploited in one way or another because their real vulnerability has been underestimated. How do you think those people on the fringes, the ones you might mentally write off as 'losers', get to where you see them as adults?  I'm not saying that everyone who can't hold down a job or maintain a relationship has PDA, but I bet some do. 

 

Other kids with PDA ended up in institutions, because nobody could believe that someone who could talk so well could have so little understanding of how the world works. 

 

It's hard to believe that someone who appears to be social and highly verbal can be autistic, and not necessarily mildly autistic.

 

PDA is a form of autism.  It is an Autism Spectrum Disorder.  It is real.  It always has been, even when it had no name.

 

Those sceptics will be right, in a way.  "These kids" have always existed.  Not in huge numbers, and not in the places those sceptics are thinking.  These aren't children who play up a bit to get attention, or who just can't get their homework done.  They're not the ones who miraculously no longer qualify for a diagnosis after their parents have done a parenting course. 

 

There always have been a subset of children - in special schools, residential placements, foster care, juvenile detention centres, or at home with a family who can't understand why their dream of happy family life turned out this way - who act like there is something very wrong with them, but who nobody can figure out.  I didn't spend a huge amount of time working before I had a family of my own, and don't have heaps of experience, but looking back, I can think of children I have known who very probably had PDA.  They would be teens and young adults now, still with PDA, but with less chance now of being integrated into the world around them.  We hear all the time how early intervention is the key.

 

All those grown-up kids with ruined lives that I have been describing started out somewhere.  Once upon a time, they were somebody's baby.  Probably a much-loved baby with besotted parents who looked and looked at their little sleeping faces with so much hope.  Bright little toddlers who walked early or late, who showed puzzling behaviour but also so much promise.  Preschoolers who ran excitedly into their classroom only to be handed back to their parents at going-home time with tales of injured playmates, broken toys, out-of-control behaviour.  Children who sat waiting for their friends to come to their birthday party only to have no-one come, driving home the dawning realization that no matter how much they want to be a part of the world around them, they just don't fit.

 

When a child's life is ruined, so is his family's.  How would it feel to be told that you child is ruined and it's all your fault?  That you had this one important job that almost everyone else in the world manages to at least scrape a passing grade on, and you failed? How do you think it feels to be the mother of "that child"?  Or the father, with little outlet for expressing how it feels to see all your hopes for your child slipping away, being smashed by their outbursts?  To spend years with the isolation that comes with having a child who is not like anyone else's child.  Many families have other children who are developmentally normal, but even that doesn't spare parents from being blamed for their child's behaviour.  Blamed by schools, other parents, family members, social workers, and broadly by society at large.  By ignorant people who comment anonymously on internet articles.

 

PDA is very real.  So is the damage that it wreaks on real peoples' lives when left unrecognized.  What's changing now is not "how kids these days are being raised".  What's changing is that now we have a name for something that has been crushing the lives of children and families, unseen by the world in general.  We can name it.  We can call it what it is.  In old stories there is often this belief that knowing a name gives power over that thing.  There can be some deep truths hidden in old stories.  When we give a thing like this a name, we have a handle on it.  We can begin to define its boundaries.  We can start to unravel the layers of where one diagnosis overlaps another.  And we can tell the person to whom the label is applied "it's ok, it's not you, it's This".

 

It's not a Get Out of Jail Free card.  Children with PDA still have to learn how to behave in a way that does not impinge on the rights of those around them, as we all do.  What having a diagnosis does for them is signpost how to help them achieve that.  Knowledge is power.  These children have a right to know why they struggle where others around them do not, and to learn to have power over their reactions to the world around them - in other words, to learn self-control. 

 

In giving them the label of Pathological Demand Avoidance Syndrome, we are not giving them or their parents an excuse. Nor are we making up something that isn't there.  The problem is very real, and is already there.  What we are doing is validating their experience of that problem and giving them a framework for understanding it. Diagnosing a common core of behaviour draws an outline around the behaviour and allows us to separate the behaviour from the person, and thus begin to understand the difficulties that underlie the behaviour.  Once we pinpoint the skills that are not developing as they normally do, we can address those skills, and begin handing that person the tools they need to get by in the world. 

 

Of course, there is the risk that when it is still new (to public awareness), a diagnostic label will be slapped all over anything that loosely resembles it.  Probably a few, very few, parents might reach for it when in fact it isn't there.  But is it worth pooh-poohing the diagnosis on their account?  I'm not great with expressions, but I kind of think "throwing the baby out with the bathwater" might apply here. 

 

Right now there are sweet, fresh little babes (probably already being labelled as 'colicky' or 'high-needs'), and beloved, perplexing little toddlers, and bright, intriguing, already-struggling young children who can be spared the sort of things that happened to kids like them in your day.  Isn't it great to think that these little ones now have hope?  If we can get them recognized and diagnosed sooner rather than later, we can help them find their step in the world.

 

 

Extreme Parenting

I did a guest post, of sorts, the other day here on Steph's Two Girls.  A couple of people commented on my use of the phrase 'extreme parenting', and when I began to think of how to reply, I decided I might as well put it in a blog post.  So here you go.

 

Yes, calling what I do "extreme parenting" kind of makes it sound like more fun than it is.  But sometimes it's all about spin.  And sometimes you have to doctor that spin.

 

I have a choice. 

 

I can think things like "poor me, poor us, my poor little girl.  who can help us? we deserve help. other people have it better. somebody ought to do something. this is hard. this isn't fair" etcetera and so forth.  I'd probably dress up the sentiments to sound more grown-up and rational, but the underlying theme would still be the same. 

 

Or I can hold onto my outlook on life as being one great adventure, and tell myself "We can do this."

 

My children are watching me live, and I need to make sure I model how I want them to approach life.  It's going to be hard, and it's going to be long, and I hope they will let it be awesome.

 

So I doctor the spin.  I need that spin.  My Dad used to tell me "Non illegitimus carborundum - Don't let the bastards grind you down." If I wasn't allergic to tattoo ink, I'd get that inked on so I wouldn't forget.  (Yes, I know it's not real Latin.) Sometimes those 'bastards' are just the impartial, indiscriminate, unavoidable circumstances of life.  I won't let them grind me down.

 

Right now our life is pretty good.  Sheer tiredness is my main foe at present, but I am slowly winning against it with some well-played strategy.  But in any good adventure there is always the part where it looks like the hero/heroine might not get up again, might not get out alive, like the odds are stacked too high. We've been there.  I hope we never go there again, but probably the path of our adventure will one day lead us to some new challenge that seems unsurmountable, or through some deep, dark passage that we have to blindly feel our way through.  Life just is like that. 

 

But adventure without the hard bits wouldn't be an adventure, would it?  Just like extreme sports wouldn't be extreme without the risk.

 

Sometimes any kind of parenting is kind of like an extreme sport, in that once you've started, there's no turning back.  Once you've jumped out of the airplane, there's no climbing back in.  You can pull the 'chute sooner or later, but you're still going to have to ride out the landing.  Once you get up the mountain, you've got to get back down again, one way or another. 

 

In almost any kind of sport, you can hit that point where you'd really rather quit.  It might feel, just for a moment, like it would be easier to admit defeat, tell yourself you've done a pretty good job, maybe even done more than you thought you could, and go for a much-needed hot shower.  Only you don't, because you would know that you hadn't really given it your all.

 

We can reach that point in any relationship.  Relationships take work, and parenting is, at its heart, a relationship.  One we not only can't back out of, but one that we don't cut corners on.  So we parents push through the uncertainty, the lack of support, the tiredness, and we research, we advocate, we teach ourselves new skills and new strategies and new ways of being so that we can be the heroes and heroines our children need as they learn to be the heroes and heroines of their own stories.

 

Sometimes I lack confidence in myself.  Sometimes I lack resources or support.  But sometimes putting a brave face on things can make us feel brave. 

 

I've jumped out of airplanes.  I've strapped a slippery board to my feet and thrown myself down a mountainside.  I've defied gravity with two wheels and I've risked my neck at high speed on four legs.  I've jumped off of cliffs and slid down guy-wires and other things my mother shouldn't know about.  I've even faced bears and hypothermia just for fun. 

 

Sometimes I need to remind myself that I have done these things; that I can do these things.  I can do hard things.  I can do it afraid.  Life can be hard, but I can do it.   

 

Why do people do this stuff?  It does sound a little crazy to seek out danger just for fun.  I guess it's for the rush that comes with not dying or being horribly maimed.  For myself, doing those things was more about the discipline of doing hard things, and also to keep myself in mind of the fact that actually, life on this world is fraught with danger and therefore doubly precious.  But still there is always that rush when the bear doesn't eat you and you don't die. 

 

Back when I used to work with other people's children (some of them grown-up children), I used to jump out of bed every morning filled with excitement for the day.  Apart from the joy of getting to spend time with my students, it was such a privilege to be a part of their stories. There was always the possibility of some exciting victory, and I would get to see it! It was like the rush of facing danger and being still alive: She was afraid, and she did it! He said a word! - Twice!! Doctors said he wouldn't see his 3rd birthday, and there he is, doing what he dreams of!  And I was there! It was so amazing to get to be a part of such stories. 

 

Now I get to do that with my own children.  I admit, I more often crawl out of bed toward my cup of tea and pry my eyes open with my fingers than jump out of bed with excitement, but that's just down to pure physical tiredness.  It is such a privilege to be a part of their stories every day, and to be on hand to witness their victories. 

 

Yes, it is hard to be the parent of a child with additional needs.  It's hard, and it's full-on, and it's full-time.  But it still is an awesome adventure.