Tuesday, 20 March 2018

Stranger in a Strange Land

One of my first friends was a small Pinus strobus that stood at the edge of our garden, a White Pine tree.  I remember perfectly the smell, the bark, the smooth patch on the trunk where I used to lay my cheek and the coolness of it in winter, the soft, brushy roughness of the needles in my hands, the dappling of the sunlight underneath in summer.  Most of my early memories are sensory, and therefore accurate, even decades later.  I won't say too much about them, because if I convert them to verbal memory, the file becomes too easily corruptible and the pathways to the originals might be lost to me forever.  They are too precious. 
When I started kindergarten I found out I was different.  The other children all knew what to do, and would move from one activity to another like a school of fish.  I tried so hard to figure out how they knew.  I was the only one who didn't know the secret, in a class of about 30.  Somewhere I heard the word "retarded", and I knew what it meant. 
I remember the day I made the decision to join the world that other people lived in.  I was five years old. I sat under my pine tree and debated with myself.  I knew that most people didn't live in the world around them, they live in the world of other people.  Sometimes, in places that were not too noisy or fast-moving, I could take part in that world.  People saw and heard each other and understood what they were doing together and could share ideas, but they didn't really see or hear the world around them, not as it really was.  I imagined it sort of faded into the background for them, like the way people faded into the background for me when I was in the real world.  By the time I was five, I had figured out how to make the real world fade into the background for a while, but it was hard.  It was so hard. 
The day I made the decision, I somehow felt that I had come to a crossroads: I could stay in my world where sunlight and wind and trees and tiny things are real and could be friends, or I could join the world of people, and stay there.  It had to be one or the other.  I couldn't keep switching back and forth, but I don't know how I knew that.  I loved my world.  I didn't want to leave it.  The world of people was so hard and so exhausting.  I sat and stroked my tree and felt that I could never leave the world as I knew it to be.  I watched some bigger boys horsing around on the side of the road, heading down the street to the park.  What if I had something to say one day, something really important?  I thought of what happened so often when I tried to join in with other children, to tell them something, and how they would act like I was invisible. (This wasn't an act or something that was deliberate, I have watched my own child encounter the same reaction, and only by seeing it from the outside, as an adult, realised that there were so many essential skills I had been missing, like knowing to be close to someone and facing them and how to get their attention before speaking.)  And I knew the word "retarded".  And another, scarier word: "crazy".  I knew that's what they would say, and I knew they wouldn't listen.  I couldn't live in my world and one day decide I wanted to tell people something.  I knew as clearly as if I had asked a question and had it answered.  It had to be one or the other.  So I chose the hard way.  Because one day, I might have something important to say, and I would need to be a person with other people if I wanted to have a chance of being heard. 
So that day, I said goodbye to my friend.  My friend who was only a tree.  "Only" a tree.  I left behind so much beauty I could have known.  But only I would have known it. I would not have been able to share it.  I chose instead to live in this hard, loud, confusing place where I don't know the rules, and never go back.  Maybe not quite never, but that day i didn't know that.  I only knew that I would still have the knowledge of the other place, that the real world was still there, underneath, in all its beauty, even if I couldn't be a part of it, and that had to be enough.
As it turned out, it took me a long time to leave that world behind, even after I had made that irrevocable decision. (Why irrevocable?  Why did it have to be one or the other?  I don't know at all.  I only know that I was and am certain that it was and is so.) But it was like having started down a path from a definite fork in the road.  I had to keep trying.  I still found refuge in watching the dance of sparkles in sunbeams.  I could still shut out the noise and frantic busyness and lie on the grass and feel the sunshine warm through my clothes and feel the thrum of the earth beneath me, but I couldn't stay there.  I had to keep coming back, and keep trying. 
As I got older I knew with the same certainty that drove that initial decision that to be an adult I had to be able to stay in what other people called "the real world" all the time.  I do that now, and I find that I can. But I still know that other world is there waiting all around me.  It will still be there one day when I am old and can drop the responsibility like a winter coat in spring.  I have to hope that I can still find my way, then.

As an aside, I did also, in school, learn to enter a third world, the world of imagination.  It was very definitely different to my earlier world, which was really only a deeper way of being a part of my surroundings.  Imagination was never real, and I always knew that, in spite of the concern of adults over my daydreaming.  I had a good laugh the day when, as an adult working with children, I was taught about daydreaming as a "maladaptive" strategy, something to watch out for in our young charges.  I found it very adaptive.  It was a much more pleasant way to pass the hours of tedium imposed on us by school.  It also was like exercising a muscle, so that by my mid-teens I could solve problems or learn new skills, all while apparently sitting at my desk "daydreaming"; a very useful skill indeed.  But very definitely not the same as the depth of awareness of small pieces of physical reality, without interference of time, that I knew as a small child. That was more akin to what I have heard people describe as a state sought after in meditation. I do think that 'normal' people sometimes work very hard to teach themselves to enter, for a few minutes, the world that perhaps very, very small children and perhaps autistics already inhabit effortlessly.       

Saturday, 10 September 2016

Why I'm Not Worried About My Child's Development (More on the CTFD Approach to Autism)

I was writing before about how we, in the general sort of 'we', can calm the f*** down about autism.  This idea is based on adapting the CTFD Parenting method. 

I wanted to expand a little more on the topic of worrying about our kids.

My 3rd child has already flagged up some early autism markers on the development screening check.  Not responding to his name, not holding out his arms to be lifted, no two-way turn-taking in play or conversation, no imitated speech sounds, in fact no imitation of us at all.  These are some fairly definite delays in communication development in an otherwise bright and fast-growing baby.  But I'm not actually worried about it.

Why not?? Here's the thing:  There's a difference between tracking and supporting development, and being worried.  So he has some early autism markers.  So did my second child.  Oh no.  Panic, panic.  My children might have some autistic traits.  Oh, wait, so do I.

It only recently occurred to me that professionals who evaluate my children will, in their minds, be looking for something wrong with them.  I don't see my children as being broken.  They are different, not wrong or damaged or broken.  Different can be hard, but it's ok.  They don't need to be fixed.

So why would I seek a diagnosis or evaluation at all, then? Well, that's a good question, and one worth writing about in more depth some other day.  The short answer, though, is that I want to know more about their strengths and challenges, and I want to know as soon as possible so that we can support their development as bets we can, and try to avoid any missed steps in their development that will be harder to make up for later on.  But I see that as proactive parenting, not as worrying.

Everyone is so quick to reassure us.  "There's no need to be worried." "Some children just pick these things up later. " (Really? That's a fairly significant chunk of typical development to 'just pick up'.)  "Maybe it's just an atypical development pattern." (Yeah, like autism.) "We'll see what happens when he/she starts school." (Right.  Because early intervention isn't really that big a deal. - Oh, wait, what about all that research and the 'earlier the better' stuff?)

The thing is, all those people are talking from the point of view that I must be afraid that there is something wrong with my child.  I really don't think fear-based language has a place on child development screening questionnaires, and I don't think it has a place in conversation between parents and professionals or para-professionals unless a potentially life-threatening medical condition is involved.  I've never yet heard of anyone who had a fatal case of autism. 

Granted, I might be less casual if one of my children failed to begin speaking, or was really severely impaired in some way, or was self-injurious or violent.  And there are plenty of parents out there who do have every right to worry about those things.  Even the more everyday worries about "Will he be ok at school?" "Will she make friends?" "Will his teacher understand him?" "Will she ever hold down a good job?" are perfectly valid, and I don't mean to belittle them.  It's the contagious fear that there might be something wrong that I don't think fits.

I know some fantastic, intelligent, empathic, autistic adults.  They are some of the most deeply vibrant people I know.  Some of the people I love best in the world are on the autism spectrum.  I'm not afraid of my children being like them. 

So, this little child of mine is showing signs of autism.  I'm not going to sit back and see how things pan out, as those people who apparently believe that autism is to be feared would have me do.  Just like I'm not going to drop toilet learning and see if he one day starts using the toilet.  Or let him watch television all day and see if he learns to read by school age.  And it's not because I am worried about toilet learning, or worried about him being illiterate.  It's because I am a parent.  I do parenting.  I watch over my children's growth with delight, and notice when they seem to need help getting something, or when they need a little encouragement to go on to the next stage, or when they are ready for a bigger challenge or more independence. That's parenting.  Maybe he will pick up communication skills without intervention.  Maybe he would teach himself to read while watching Paw Patrol with the subtitles turned on. But reading him stories and playing letter games is not going to do him any harm, and neither will playing more face-to-face social games.  You could call it early intervention, but I would just call it parenting.

I won't do my child any harm by playing with him more, so why not do it? I can't quite get my head around why people who are supposed to be helping parents do their job would not suggest simple interventions to support social development through play and parent-child connection, and instead tell them "Don't worry".  Unless it's that they see autism as some kind of incurable disease that nobody would want to have, and not just a different way of being.  And that is actually something that I think is worth being scared about.


Progress and Hope

Once upon a time, we had a little girl who needed help to dress, go to the toilet, and eat.  A child whose daily rages broke furniture and left teeth marks.  A child who could not hold still, even to fall asleep; whose slurred speech consisted largely of repeated questions or phrases, or toilet words in a sing-song voice, punctuated by harsh vocal tics. A child who would learn a new skill or information only to have it disappear as if it never had been.  A child with whom it was becoming difficult to interact without triggering spitting, hitting defiance. 

It felt like we were losing our beautiful, precious, special child behind a screen of challenging behaviours, symptoms of her neurology.
I don't like to think about the reality of that time, much less describe it, and still less post it indelibly on the internet for all and sundry to read.
BUT ...and it's a big 'but'...
I want to give other families who are where we have been HOPE that it can get better.
Right now, we have a child who eats well, sleeps less than average but well enough, is growing and learning at a rate that has made up much lost ground, and who fills our home with joy every day.  There are still meltdowns, but far, far fewer, and with far less intensity.  She speaks clearly and eloquently most of the time, and can tell us about the wonderful creative ideas she has.  Tics are minimal, and mostly unobtrusive.  She plays and works calmly at her projects, absorbing information in depth and detail. She makes her own bed, brushes her own teeth, and is learning to help pick up toys.  She has performed on stage in a dance performance, and makes beautiful paintings.  It's been like this for so long now that it's hard to remember how it used to be.
We don't peddle chocolate-covered miracle pills here.  These changes were brought about by the grace of God and by this child's own strength of character; all we had to do as her parents was to love her through all her challenges and clear the path for her to make these great leaps forward.  And it took time.
I'll write in more depth about the steps we took to do this as I get time, but I don't want anyone to read this blog as I post about PDA strategies and think I'm talking about "mild" autism or PDA or Tourettes, and lose hope thinking that their situation is much worse.  Trust me, we've been there, and it was pretty bad.  But it got better.
Finding out about PDA was our first step in getting to where we are now.  We stopped all attempts at conventional discipline or motivation, and the upward climb started there.
I'll be saying this a lot, and in as many ways as I can think of, because I think this is essential to understand when dealing with PDA:
By "behaviourist strategies" I mean reward and punishment, clear and consistent consequences, star chart and naughty-step style approaches.  In fact, they can make things worse.  They might work a little, for some people with PDA, in a limited way, but even then the cost is probably not going to be worth it.  These strategies increase the pressure to conform to expectations, which increases anxiety, which increases the defiant and explosive behaviour that is so often a part of PDA. 
So dropping all of the above completely was our first step to setting our child free to move forward again. 

We had to first of all get her anxiety levels down to a baseline from which she could engage without being hampered by her own defensive reactions - reactions that happen to look a lot like extreme hyperactivity and deliberate defiance.
We did a "demand detox", dropping all unnecessary demands, and keeping as many things negotiable as possible.  It took about 3 months before she was ready to start reintroducing demands, very slowly and gently.
Then we set to work on sensory issues.  As we started looking for triggers, we realised that Sensory Processing Disorder (this isn't a separate diagnosis, this comes along with autism) was underlying a lot of the challenging behaviour and outbursts.  Sensory sensitivities also contribute to anxiety, which in turn can manifest as defiance. 
We had already taken our daughter out of school, so we went through the home environment and identified all the sources of problems.  Noisy toys, scratchy jumpers, all went out. Temperature, sound, sensation, smell, cycles of activity and rest - all had to be considered and addressed. The more triggers we found, the easier it became to find them, so although this was a daunting task at first, it went quickly and was highly effective, with tangible results after each change.
Through all of this, as always, we worked to keep our child's physical needs met as optimally as possible, and this got easier as things got easier for her.  Sleep, food, warmth, and physical care, I believe, are opportunities to fill a child with a sense not only of physical well-being, but also of being nurtured and loved. Children need that sense of nurturing in order to be able to fully thrive.
The one sort of set 'tool' or method we did bring in was Parenting By Connection.  We already were into what might be called attachment parenting or gentle discipline, not that we ever saw ourselves as using a particular style, but with the basic philosophy of the relationships within the family as being paramount to raising children.  We haven't implemented the PbC parenting tools in a set way, but they are very simple, and lay out a way to maintain connection and help children with big feelings in a positive way, and I think would be helpful to parents who are looking for specific ways to help their children who are struggling with behaviour or emotional regulation.
Similarly, we had already come across Ross Greene's book The Explosive Child. His system of Collaborative Problem Solving lays out what is essentially good parenting for any child in a way that is easily accessible to parents who are in the midst of dealing with extremely challenging behaviour. 
This is a pretty short and un-descriptive basic list of how we manage PDA autism and Tourettes Syndrome in our house, but it really is just meant as a quick introduction, and to give you an idea of how we have had good results using a wholistic approach.
PDA (which is a form of autism) and Tourette's Syndrome (which involves a whole lot more than just motor and vocal tics) affect every aspect of life for our family, not just for this one child.  It might seem extreme to explain the adaptations we have made to our whole lifestyle, but the challenges this child deals with are pretty extreme, too.  We couldn't afford to spend months or years trying out different management measures piecemeal.
We needed to work with a management plan that covered everything, because these conditions affect everything. 
And it has been worth every late night researching and organizing, worth every hour of effort, because we have our little girl back. 

Tuesday, 10 November 2015

What Is and Isn't PDA

My daughter lies on the floor, waving her legs around so I can't get her tights on.  She can't do it herself; her legs are broken.  This one needs to be amputated.  It hurts right here.  She's too tired and floppity.  I catch one kicking foot, but she's off, she just needs to check something in her game.  She is always playing some imaginary game or another, usually 'being' some character of her own invention.  The tights have to go on before it's time for preschool, so I get up and follow after her.  This is demand avoidance in action, and it goes on *all*day*long* in our house.  But this isn't my PDA child.
This isn't just learned behaviour, either.  Some of it undoubtedly is, but for the most part the tactics are not the same as her older sister's, and nor are the triggers.  This is a child with a more typical, and milder, presentation of ASC (autism spectrum condition) traits.  And the demand avoidance is part of that. 
So how do I know she doesn't have PDA?  She spends a lot of time and energy avoiding demands, and a lot of time engaged in imaginative role play.  Several people have mentioned that she acts a lot like their suspected-PDA pre-schoolers, some have questioned whether she might just have a milder presentation than her sister.  I could be wrong, but I still maintain that it is a typical presentation of mild ASC traits in a four-year-old girl. 
The demand avoidance is natural.  She is busy with her own happy little world, and doesn't want to be interfered with and made to conform to another person's agenda.  Perfectly normal for a child with Asperger's or even maybe ADHD, or maybe just a strong will, deep imagination, and some mild autistic tendencies.  What this behaviour lacks, when compared to my PDA child, is the pathological aspect to the demand avoidance, the obsessive feel to the behaviour.
With child number 2, if I keep pushing and hold firmly but gently to the boundaries, it may take a while, but she will eventually comply.  With my PDA child, any attempt to push toward compliance will inevitably escalate to an explosion.  It might happen either sooner or later, depending on demand tolerance at that particular point in time, but she will explode.  Not out of temper or defiance, but out of desperation.  She needs to avoid demands placed on her.  She avoids them like a wild colt avoiding rough attempts at 'breaking in'.  Like being made to put socks on is a life or death situation.  Pushing her will break her and she will explode in a wild attempt at self-preservation.
And that, in essence, at least as far as my experience with two very different children, is the difference between just plain demand avoidance and Pathological Demand Avoidance.  One avoids demands because she can, the other because she has to.

Monday, 13 July 2015


Welcome to my blog. 

Actually it's kind of more of a splog. ("You know what a spudge is Owl? It's when your sponge gets all...")

It's a little sloppy, but I'm not going to apologize.  Same as I probably wouldn't apologize about the state of my house if you were to visit, unless maybe you actually tripped on stuff or had nowhere to sit.  It is what it is, and I'm not going to try and pretend to be perfect.  Ain't nobody got time for thatThis is real life.  Chances are I'm typing with a small child sat on my head, or with another one sleeping over one should while I carefully type with one finger and no glasses because reaching to get my glasses might wake the baby, and nobody wants that. 

So I don't do references either, mostly.  This is not an academic blog.  You've got internet, if you want to verify stuff you can use google. 

I'll do my best not to offend anybody, because I like people, and if you're reading this and I met you in real life I'd probably like you.  But I also won't make a habit of replying to comments, so please don't be offended if I don't.  It's either because I don't have time or because I forgot how to do it.  I'm not a real blogger. 

I don't know how this blog stuff works. I'm not going to promote my posts or anything.  My formatting is probably going to be dodgy and variable.  I just want to share ideas and spread understanding about what it's like to be wired up a little differently. 

I've never been quite what is usually called normal, though I guess I do a passable job of blending in, and I've got this little bundle of awesomeness who lives in my house and calls me "Mummy", and she has a combination of neurological conditions that is a little unusual and there's not much information floating around about how to deal with it, so I thought sharing our experiences might help someone. 
And also I want to encourage other people who might feel alone with stuff like this and who might be having a tough time.  Life is kind of hard for most people, in one way or another, you know?  So I talked to a couple of people who do blogging, and checked with my husband, and then asked my beautiful, big-hearted child if she would mind me sharing her story if it could help people understand children like her, and she said yes. 

So if you don't really like what I have to say, you can just close the browser window, but leave out the nasty comments, ok?

Or if maybe you don't agree with everything, but some things are useful to you, just take what works for you, and leave the rest. You know yourself and your own family best, and what works for one person might not be the right approach for another.  

I will definitely challenge certain ways of thinking, but you don't have to take it personally.  I can guarantee I am not writing this AT YOU. I challenge things not because I know everything, but because I think we need to be willing to question things in order to find the best way. 

So I hope you find some helpful stuff here.  Like Red Green always said, "We're all in this together."     

The Hardest Thing

What's the hardest thing about parenting a child with special needs?  Other People. 

In fact, I'd say Other People is the hardest thing about parenting full stop.

Other people judging.  Other people giving not-exactly well-meaning advice.  Other people assuming they know better than you do what your child needs because their child would never have dreamt of acting like yours.  Other people assuming, telling you, and telling all your mutual acquaintances that all the imagined problems your child has are your fault, or that you imagine all your child's problems.  Other people who are convinced that having raised 2, or 1, or no child/ren a decade or three ago makes them better qualified than the paediatricians and professionals you will meet on your journey. 

So, how does one avoid falling into the Other People category?  Step 1: Don't judge what you don't understand.  Step 2: Fully digest and accept the fact that unless you have raised a child like this, in a situation like this, then you can not understand what it is like.  Step 3: Even if you have a child with a similar diagnosis, children are different, circumstances are different, and parents need to raise their children according to their own values and beliefs, so chances are you still don't understand as well as you might think you do, so accept that, and see Step 1.

Remember that cute bunny in the movie Bambi?  If you can't say anything nice, then don't say anything at all.  One of my children would interject here and tell me I got that quote wrong, but I can't help correcting the grammar.  Anyway, it's the sentiment that counts.  It's pretty basic, and so often forgotten by grown adults who should know better.

So, if us 2e or SEN parents don't want to be told about all the things we're doing wrong and how to do it right (and trust me, Supernanny can't cure neurological disorders or developmental delays with a naughty step), what can a concerned bystander do? 

If you ever went to Sunday school, you probably heard that story of the Good Samaritan.  This guy gets beaten and left by the road, and some people make up excuses about why they shouldn't help and hurry past, but then this Samaritan comes along and helps the guy.  The moral of the story is usually given by asking the children "who was this man's neighbour?"  The answer, of course, is the guy who helped him. 

My point?  Be a neighbour.

Smile.  Say something nice.  Talk to the child like he or she is a real, live person, complete with interests, likes, and dislikes.  Offer to help. Therapy and appointments are stressful and take up a lot of time.  Siblings get less than their share of attention.  Offer lifts to appointments or take siblings to the park so they don't have to spend their afternoon in a waiting room, again. Children who are not keeping pace with their peers in terms of development are very prone to critically low self-esteem. Don't buy age-but-not-developmental-stage appropriate gifts.  Spend time on children, let them feel like they are worth time instead of money.  If you feel some thought about what the parents "really ought to do" creeping in, remind yourself that it is not your place to judge, and find some positive to replace that thought with. 

Be a neighbour, not one of those other people.


** Oops!  I hadn't realized that editing bumps posts up on the timeline, so this is actually an old one from last year, but I fixed some formatting and spelling. 

Sunday, 12 July 2015

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.