And I don’t. I answer his questions, and I am ever glad he is capable of asking questions. But autism has a way of twisting “normal milestones” – like the endless question-asking of childhood – into something so utterly different and challenging.

My son’s latest and growing obsession, is vehicles; specifically their logos and licenses. He wants to know the names attached to every logo he sees (Mazda, Toyota, Mercedes etc), but if he can’t see the logo on a vehicle or we didn’t see it in time to tell him what it was as we drive past, he’ll get quite anxious about wanting us to turn the car around so he can get a second look at it. At times there is no visible logo – such as on many local buses and in a good many of his vehicle books – which leads to lots of questions about what the logo is and why it’s been removed. He also wants to know if Hino makes cars as well as trucks, does Mazda make cement mixers, etc. He wants to know how many licenses (learners, restricted, full, truck, heavy truck, passenger carrier etc) are required for each kind of vehicle; how long it takes to get each type of license; how old he has to be to get each stage of license.

If it was just the unusual questioning, I could handle it (Google gets a good work out in this house). But it’s not that simple. Hardly any question gets asked once. He’ll ask the exact same question time after time, even when he’s been given a full and clear answer; like he’s forgotten that he asked or what the answer was, moments after he’s been given it. And woe if we don’t know the answer: “I don’t know” is not an acceptable reply; not only will he keep asking but he will get progressively more upset each time he asks and doesn’t get a full reply. He often counters with a pleading and anxious “you can know, you can know!”

There are still times we can’t quite decipher what he is actually asking because of his odd sentence structure and choice of words. Sometimes he can’t form the sentence he wants or remember the question he was going to ask, which makes him considerably upset as he tries to convey both the question itself and the fact that he can’t get it out. He’ll even ask us to ask his question for him – “What’s my question?” – and get upset that we don’t know his question before he’s even said it aloud.

We do our best to answer the endless, repetitive questions and to deal kindly and patiently with the consequences of not being able to quite understand or reply to his queries. Both my husband and I have learnt a large amount now about the New Zealand licensing scheme for vehicles we’d never contemplated before, we know most vehicle logos and can even spot some of the differences in earlier versus later model logos, we’ve learnt some of the history of vehicle companies so we are better equipped to answer questions about who makes what, and so on.

I’ve had plenty of experience dealing with the “normal” questions from his same-age peers; the endless questions that I often hear normal parents complain about. Those questions I can understand and answer; questions that would leave me feeling like the knowledgeable and helpful parent I thought I would be when it came to this stage of his childhood. And if the child doesn’t get an answer, they don’t cry and have an anxiety response. And when they get an answer, they don’t ask the exact same question straight away, or next time I see them. Instead of passing on what I know to my son, I’ve had to change and grow my knowledge in order to pass along completely new information about things I never had to know and got by just fine without knowing all my life. I’m up to that challenge; in some ways it’s a wonderful challenge.

So this isn’t “normal” childhood questioning per se, but it is normal in the autism-parenting world, where we strategize to lower anxiety responses and address verbal language deficits, and become experts alongside our children in such un-noticed world-details as logos and licenses. A world where the very act of forming sentences and actively seeking knowledge about the world, is not the stuff of parental complaints, but the stuff of long-fought and hard-won celebration.

Feinstein’s book is valuable for its historical explanation of the changing diagnostic criteria for autism, which is particularly relevant and current with the DSM-5 criteria changes looming. He even shares information about some of those DSM-5 key changes, and has some interesting dialogues with some of the key figures involved in the formation of past and present diagnostic manuals. The book talks as much about Aspergers as it does about “classic autism”, and provides some interesting insights on the differences, similarities and possible future relationship of the two conditions.

Feinstein also discusses the emergence of charities and organisations set up across the world to help those with autism and their families, and relates how the emergence and focus of those groups reflects different government and cultural attitudes towards autism. Through-out the book he shares the changing scientific theories and interviews with the personalities behind the science (which is already a little dated now in 2012). He has made the effort to track down key players in the field of autism from through-out history, so that the book is very much a who’s-who (including photos giving faces to the names).

But the part that I found most intriguing, and that was largely new and eye-opening for me, was how much and in what ways Nazi Germany impacted on the history of autism. In particular, it affected those involved with the origins of autism, views of their research, and the early treatments of autism. For example, the popularity of the psychoanalytical approach towards autism – which still remains strong in some pockets of the modern world – can in part be understood as a reaction against the eugenics of Nazi Germany: It was seen as far more savory to blame the coldness and incompetence of parents (especially mothers) for their child’s condition (therefore making autism avoidable and treatable), than to concede to the notion of the predetermined, unchangeable, irredeemable subnormality that the Nazi culture wanted to eradicate from humanity.

Here, Bettelheim makes his appearance; a man who is both threatening, and ironically perverse. I was appalled by the rather unscientific (and frequently absurd) psychoanalytic approach to autism, and the associated cruel practices, such as “parentectomies” and “packing”, supported by people like Bettelheim; yet Feinstein helped me to sympathetically understand how such a man and personality was formed. Bettelheim was himself a victim of Nazi Germany, and was sympathetically received as a man who intimately understood the suffering of the withdrawn and scared autistics, and was passionate about protecting them from their mothers. Of course, the result of this passion would be further preventable suffering; for mothers and their autistic children.

I find it somewhat amazing that after years of reading about and discussing autism, it wasn’t until I picked up this book that I came to understand the links between Nazi Germany and the history of autism: It is not just an interesting piece of history that ran alongside the emergence of autism; it is part of the story of autism.

I found the writing of the book itself somewhat jilted or unpolished, and awkwardly put together in places; like Feinstein didn’t know quite how to stay on top of all the people he interviewed and researched, and struggled to balance the conflicting accounts of personalities alongside a historical account of autism. But the insights and rather remarkable amount of research that has gone into the book, makes it a valuable resource, that I found both enlightening and educational.

The charity Autism NZ is submitting their own response to what they consider to be the most relevant questions for autistic children, posed by this government “Green Paper on Vulnerable Children.” You can find the Green Paper website, and all the questions they are seeking input on, here. Autism NZ’s response, can be found here (pdf). I found their own response was quite good and adequately covered a lot of my autism-relevant concerns, but I specifically wanted to add some thoughts to their answer to one particular question.

Autism NZ has asked people to share their comments about their submission (information about how to do so can be found on Autism NZ’s website, here). I have sent them my comments for their consideration, and thought I might as well share them on my blog too.

If you would like to make a submission too, you have 18 days to make it directly (end of February), or if you want to forward comments to Autism NZ, you have until Wednesday February the 22nd.

My submission, sent to Autism NZ:

I would like to submit further comments for your consideration, under the following Green Paper question:

How much monitoring of vulnerable children should the Government allow? Who should monitor vulnerable children and under what circumstances?

The monitoring of children with disabilities, must be performed by people with relevant knowledge of, and experience with, the child’s disability.

For example, a condition like autism exhibits behaviours that have historically (and are still sometimes) mistaken for a simple lack of discipline on behalf of the parents. The exhaustion and desperation of the parents can also be mistaken as a problem wholly with the parent, rather a problem that has arisen out of lack of information and lack of support for that family.

It is vital that any monitoring of families like those with autistic children, is performed by people who can identify the causes of problematic behaviours with a background knowledge of the condition, so they can identify what can help the child and parents, and not make the situation un-necessarily and avoidably worse for all members of that family.

It is not uncommon for parents of autistic children to fear that the behaviours of their children will be misinterpreted in such a way as to not just leave them victims of unjustified condemnation and social isolation, but also fearful that their child will be removed from their care. In order to encourage parents of vulnerable children to seek support and advice, it is vital that they not fear losing their child. It should be made clear that the priority is to keep the child with their own family, and that difficult behaviours will not be presumed to be the result of abuse and neglect.

The parents of autistic children are well-known for being dedicated parents who will do anything and everything to help their child, financially and emotionally. This desperation can in fact leave the family even more vulnerable; open to abuse by those who offer unproven or false and expensive “cures” for the child’s condition. This extra layer of vulnerability can be addressed by providing information and support as close to the time as diagnosis as possible. Merely monitoring a family – without the accompanying provision of information and support – is arguably unhelpful, and often anxiety-inducing.

It needs to be understood that the very act of monitoring an autistic child can be anxiety-inducing and extraordinarily upsetting for the child. Having someone new in the home, who perhaps says the wrong words or knocks the wrong item in the house, can set off meltdowns that it may take the parent literally hours to ameliorate after the visitor has left. In order to counter-act this, it would be well advised that anyone intending to visit the family to monitor or assess the situation, be informed beforehand of how best to come into the home, and be very mindful and respectful of the parent’s instructions about how to be around the child.

For the same reasons, frequent visits from a multitude of government departments, is unhelpful and can make the family’s life more difficult than it already is; limiting the number of visitations required to assess needs, may be in a family’s best interests. (This will obviously be relevant to the question of government inter-department co-ordination.) Thereafter, it may make sense for any monitoring or raising of concerns, to be done via the specialists and therapists that become part of the family’s daily / weekly life. Again, this avoids a multitude of visitations and saves time and money for the government.

The most popular critiques were originally directed at the loss of existing divisons within the autism spectrum; most especially of the separate category of “Aspergers” (to be folded into autism more generally in the DSM-5). More recently, the focus has turned to the (supposedly high) number of people who may lose an autism diagnosis altogether under the new criteria, and in turn concern over consequent loss of access to government-paid-therapies, special schools, and insurance cover. (Those numbers are highly debatable and hotly contested though, see for example this blogger’s post looking at the recent news stories and issues, and this press release from the APA (pdf).)

I’ve written a few posts already (which I will provide links to where relevant in this post too), looking at and musing over the changes to the criteria. I’m not alarmed by the changes on the whole, in fact I think they’re important and much-needed. So in the face of the recent (and rather alarmist) reactions to the changes, I’ve decided to compile some of my already covered points about why the DSM-5 might actually be awesome, and add in some new ones too. I don’t expect whole-hearted agreement on their goodness, but I think it is important to introduce and consider these points in the face of the current outcry against the changes.

(1) The changes should make it easier to accurately distinguish between giftedness and  (what is currently known as) Aspergers. Currently there is some understandable confusion about the line between the two, and the relationship between the two, which has important implications for treatment and the understanding of autism. See my previous post for more detail about how the DSM-IV creates this confusion, and how the DSM-5 may clarify the issue.

(2) The DSM-5 shifts Retts off the autism spectrum (and out of the DSM altogether), and suggests including reference to the cause of autism where known (for example, if it is caused by Fragile X). In both regards, this adds some much needed clarity to the relationship between various conditions and autism. See my previous post expanding on this point: “Genetic origins of Autism; when is autism, not autism? Fragile X and Rett Syndrome.“

(3) Educational services on offer for those with a PDD-NOS or Aspergers diagnosis, are often lesser than those on offer for someone with a classic autism diagnosis, despite that the challenges faced by those with PDD-NOS and Aspergers can be just as challenging as those with classic autism. Bringing all “types” of autism under the same head, would make it harder to continue to give those with Aspergers and PDD-NOS fewer services merely because of that different diagnosis category. (See further: “Understanding the DSM-5 Autism Criteria“)

(4) There is evidently much inconsistency in the way that Aspergers, PDD-NOS and autism are currently diagnosed, across different practices and by different clinicians (see, for example, A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders). The new criteria is aimed at providing that currently missing clarity and consistency, which would in turn make for more consistent and accurate research findings about autism. (For more detail, see the DSM-5 rationale for removing Aspergers.)

(5) The DSM-5 introduces an express severity scale, which should help clarify the currently much argued about and misused notions of “high functioning” and “low functioning” autism. It could become a much more consistently used means by which to acknowledge the different ways in which autism impacts on lives, and in turn tailor services to how much autism is negatively impacting on one’s life, rather than more simplistically to whether they have PDD-NOS (for example) rather than autism. (This ties back into point (3) above.)

(6) The express introduction of reference to “unusual sensory behaviours“. These sensory issues are a significant part of the challenges faced by autistic people; it arguably makes the diagnosis more accurate and complete by having them present as one of the options under criteria B, and it’s important to have them directly referenced within the criteria for the understanding of the disorder and provision of services.

(7) The drastic drop in ASD diagnosis variations from DSM-IV (2027+) to the proposed DSM-5 (just 11), will arguably/conceivably make is easier for researchers to study and draw meaningful conclusions about autism, and for service providers to create and tailor services to those with a diagnosis.

This is obviously not an exhaustive list of benefits – whether actual or expected – of changes to the DSM criteria for autism.

Of course the DSM-5 faces many legitimate challenges from those concerned about the changes to the autism criteria; I am aware of those concerns, and have written previous posts addressing some of them (see for example, “Intent vs Effect re the Exclusion of General Developmental Delay under ASD in the DSM-5” and “The 4 Main DSM-5 Autism Controversies“). I think that it is important though to consider why the changes to the autism criteria are being introduced in the first place, and whether the benefit of those changes outweigh the negatives (I find it difficult to imagine a change to the criteria that would ever make everyone happy when it comes to autism).

On balance, I am of the opinion that these changes are largely beneficial and heading in the right direction, though some of the chosen language in the DSM-5 and the communication of the changes to the general public, have left something to be desired.

The criteria have not been finalised yet; if you’re interested in the DSM-5 process, timeframe, and opportunities to comment on the changes, have a good wander around the official site (particularly see the links under “About DSM-5“).

Sesame Street happened.

They were doing a lovely segment about the variations between families, which lead to a discussion between my son and I about his own family and extended family, and how we differ from other family combinations. Then he asked if anyone was the same, or everyone was different in the world. I told him everyone is different, even twins; no one has the exact same body and brain. And I realised a perfect moment had presented itself. I asked whether he wanted to see a new book about how everyone is different, and about his own special difference. This received an enthused “yes”.

We went upstairs to sit on his bed to read his new book. My heart was pounding; I really felt the gravity of the moment. This was something I’d been thinking about and worrying about for so long, and here it was, happening.

He asked me to read it so I did. He had questions about various words (“what does ‘example’ mean?”), and wanted to tell me some things about the photos in his book, and then the magic word appeared in the text. “Autism.” He didn’t stop to ask me what it meant, just let me keep reading. We got to the end of his book. He said he wanted to read it himself this time.

I’d aimed the reading level at where he currently is, so he coped quite well with most of the text. And then he reached the word “autism” and paused just a while, before reading it as “awesome.” Which I thought was just so sweet and perfect. I corrected him, he kept going, but this time he stopped to ask lots of questions about what the book was telling him.

He was soaking in the messages of the book to such an extent that he started showing me how he was everything the book said he was. (This reinforced for me that I made the right decision to avoid the books which gave off the wrong information or tone about autism, as it affects my son.) For example, the book told him he has a wonderful memory and great eye for detail, so he started commenting extensively about details in the photos and what he remembered about what was happening at those times. The book told him that in some ways his brain works better than other people who don’t have autism, so he asked me if his brain is better than mine. I told him it was in some ways; this pleased him mightily. He’s been talking a lot lately about how he will be taller and stronger than me when he’s a man, and he was quite happy to add “better brain in some ways” to that list of superiorities.

In fact, he took that so much to heart, that after he’d read the book he took it upon himself to actively teach me how to draw a clock. He showed me, then told me to practice it too. This made him very happy. There was even a rather condescending tone to his voice as he talked me through it! At that point it did cross my mind that maybe I pushed the “you’re great” bit too much of autism. But the book did gently explain the extra difficulties he faces, and he did spend time also talking about those challenges mentioned in the book (his difficulty with language and tendency towards repetition in particular), so I think it was even-handed and realistic. And if he walks away with a focus on his strengths and a more positive self-identity, then that is even better that I’d hoped for.

I think it’s fair to call the whole discussion and book, a success.

After that the day continued as normal, as I’d so hoped it would. He was particularly well-behaved the rest of the day, and otherwise his usual awesome self. Just more self-aware now I guess, which is a wonderful thought. I gave him the words and some of the answers to questions that were going unsaid, but clearly surfacing in his mind and in various discussions. Sometimes you know there’s something you need to know, but don’t know how to ask about it; that’s the point I believe my son had reached. Finding the right words is even harder for someone with autism, so he needed me to help him along that path.

Autism was part of him yesterday, and will be tomorrow, from the day he was born to the day he dies. Knowing there’s a word for it doesn’t change who he is; it just aides better understanding for him, of himself and of others.

Now that that first conversation about autism is out-of-the-way, I am better equipped for dealing with future discussions, which can now arise more naturally. If something happens in his life related to his autism (as it will), we can address it without having to start from scratch; the words and ideas are already there to build on.

I particularly like that I controlled the way in which he first meaningfully encountered the word; that he didn’t hear it used as a slur or an attack on him by some bully in a  playground or a thoughtless adult, and then have to ask me to explain it. Autism is a large part of who he is and what he does and how he thinks; it would have been quite horrible if someone else had originally shaped it as something to be ashamed of, that I’d then had to counter or undo if I could. I know there will be times when people will try to hurt him via his diagnosis, but he will have a positive and honest foundation from which to stand tall.

This whole experience has solidified for me the difference between how we as parents needs-must approach and respond to autism, compared to how our autistic children need to be able to see it. As parents, we must be prepared to see and work with the very worst that comes with autism, we can’t let ourselves be complacent about our children’s abilities and well-being. We challenge them, help them, guide them, as all parents must. But our children are going to have a harder time of meeting those challenges if they see themselves as doomed or lesser beings; it is also our duty to make sure they grow up loving and accepting themselves. That doesn’t mean lying to them or not extending them, it means being honest but also reassuring; letting them know there’s a lot of work ahead of them but that it can be done and they won’t have to do it alone.

So yes, my son has autism, a truth that he needed to be told. He also has awesome, a truth that he lives and that he needs to know I see in him too.

That day was today.

I’m splitting this story into two parts. This first part is about “the book that couldn’t be found”. The second part will be about how the eventual “revelation of autism” actually went.

I was determined to have visual supports for the conversation; my son learns well from, and responds well to, visuals, particularly in book form. And so began the endless and fruitless search for the appropriate book. Despite numerous suggestions from well-meaning people, and hours spent trawling through long lists of books on charity and blog sites, no book was appropriate. They all fell short.

The vast majority of the books were aimed at those in the life of the autistic person, rather than the actual autistic person. Book after book aimed at siblings and classmates, where the autistic person is the “other”. My son is very literal and would have found this approach somewhat confusing, and I didn’t want a book told so strongly from that “otherness” point of view.

Most of the books aimed at the actual autistic individual, were specifically about Aspergers, and used that term too. My son does not have Aspergers, that would have added confusion, not clarity.

Just to make things worse, almost every book I was able to get more information on, spent time explaining that autistic people like to be left alone or don’t have many friends. My son is a highly sociable boy; yes he struggles with it, but he sure does not like to be alone, and neither do I want him to see himself as someone destined for aloneness. The very few books that came close to being appropriate in content, were all aimed at a much higher age range.

Frankly some of the books were plain ridiculous or offensive, with aspects or wording that made me cringe. Like the one entitled “Little Rainman.” And yes, that’s really its title.

After many hours trying to track down the right book, I decided to do a social story myself. I evolved the idea into doing a personalised home-made book, with my own art-work. Then a more professional one, using free-to-use images from the net to support the words. Eventually I went with using photos of himself, his own experiences, and the people in his life, put together in a properly bound photo book that I made and ordered online, using a standard photo ordering website (“Snapfish” is my regular). I was very pleased with the end product, and the two people I showed it to in advance were so impressed that they said I should mass-produce it, or something very much like it. I’m still thinking over whether I can or should, but for now I had made something that suited my purposes.

The overall message of the book is that everyone has differences, and his difference is called autism. That autism comes with good aspects, and not so good aspects, but that he’ll get lots of help to learn those things that are harder for him to do. I supported the words with examples and images that mean the most to him. I wanted the overall tone to be up-beat but also realistic, and personalised to his autism and the challenges (and advantages) that autism has brought into his specific life.

The book arrived in the mail today.

I put the it away in a drawer in the house where my son wouldn’t stumble across it, and felt far more settled; knowing I was now (more) ready for the day whenever it may come. I suggested to my husband that I actively might choose to raise the issue next Wednesday if our son hadn’t raised it before then. I didn’t want to try sooner than that, because my son has a few big things planned over the next three days (including his first movie-experience!). But I also wanted to deal with the topic before he returned to school in February, so he had time to adjust and absorb the new information (without raising awkward discussion issues for his fellow classmates, many who also have autism and might don’t know it yet; let their parents tell them when they want to.)

I was down in the lounge going over “the right time” in my mind; what time of day would be best, even what room would be best for the conversation… and then the moment had arrived.

(Part Two to come!)

The award is a way for bloggers to recognise and bring attention to other newish / underappreciated bloggers (as defined by having less than 200 followers. I have 5o much-loved followers; it’s quality, not quantity, people! And each and every one of you are quality, yes you are).

Anywho, I have to first acknowledge who gave me this award, so a big yay to Jim from Just a Lil Blog (who said some truly lovely things about my blog), and to the most wonderful “Me” from The Tumultuous Truth. After I have answered various questions that come as part of this meme, I shall be selecting five other worthy recipients, who I hope you will check out.

So, to the questions:

Favourite Colour? Maybe a purply, reddy, rich bluey concoction. With a hint of deep green. And a pinch of cinnamon.

Favourite Animal? Pretty much lizards. And cats. Except when the cats fight outside your children’s windows at 1am, in which case, only lizards. Except that lizard that bit me that time after I saved it from the pool, ungrateful little sod. I’d named it and everything, I’d called it something long beginning with G from my favourite kid’s cartoon at the time (apparently not something very memorable).

Favourite Number? 7 or 9. I’ve long thought my favourite number should be 4 – something to do with the universe and the balance of the elements and the sides of a pyramid and the dimensions of being – but I could never quite love 4 the way I should.

Favourite Drink? Back when I drunk alcohol (I simply don’t anymore and haven’t for years), my favourite drinks had rude names that would get my blog black-listed, so let’s just say I was also fond of the Bloody Mary (wait, can I say “bloody”?).

Facebook or Twitter? Meh. I suppose Facebook. I’m not a big fan of social media type platforms as a general rule.

My Passion? Education; reading (science and fantasy genres); Joss Whedon creations; the early Playstation Final Fantasy series; vampire themed stuff of all sorts, and of course my kiddy-winks. (Just pretend there was an “s” on the end of “passion”, k?)

Giving or Getting Presents? Definitely giving, and not just because I’m a nice person (though I totally am). I like giving rather than getting because I feel really awkward and upset when I find out someone has spent their time and money selecting a gift for me that I will never use or enjoy. I always tell them how great it is, but I hate been put in the position of lying or hurting them, ugh. Giving is so much more fun in general; then other people have to pretend to like my presents instead!

Favourite Day? Whatever day I and my family are happy and well and together. That doesn’t tend to fall on any particular day of the week or year, but it does seem to occur more often in Summer.

Favourite Flower? A strong-smelling rose, maybe like this one grown in my mother’s garden, called Compassion. Isn’t that a lovely name? She gave me some to take home and I took this photo of them, which reminds me that I should have included “taking photos of random stuff I adore” in that “passions” question above.

Now for five fellow bloggers who also deserve it, and meet the criteria (as best I can tell, not everyone provides how many followers they have on their blogs):

• Autism Jungle
• Out of the Fog
• The Simple Life
• The Fragile X Files

OK, so that’s four. There we go, I finally found a role for the number four in my life.

Attending a movie in a movie theatre requires conforming to a lot of social expectations, that run directly counter to my son’s natural behaviours. When my son is happy, he flaps his hands up and down, hums loudly, wriggles in his chair, and sometimes full-out bounces in his seat or stands up and runs back and forth if the moment really takes him. Not exactly good movie-going behaviour. In fact, exactly bad movie-going behaviour. I can’t reasonably expect others to adjust to his behaviour in that situation either, since it directly causes significant upset to what they paid good money to come there to do. The simple fact is that if my son cannot or will not control himself – conform to the social expectations of a movie-goer – we will have to leave, even if it means me physically dragging my six year old out while he cries and screams.

So I’m doing what I can to explain and prepare him for what he needs to do, and what will happen if he can’t do it. I’ve told him that if he hums and flaps and bounces, we will have to leave. I’ve tried to soften this potential blow by saying we can try again though another day if that happens. I’ve asked him to show me how he sits nice and still and makes no noise; he practices it beautifully. I’ve told him if he needs to ask me a question or has a problem, that he can get my attention and whisper in my ear, so he practices that too.

And then he thinks of something that hadn’t crossed my mind. He says to me “Can I laugh like this…?” And does a practice laugh. Then he says “or like this?” and does a different louder one. He wants to know how loud he should laugh and what it should sound like, in advance. I try to answer as best I can, that he can laugh when something is funny, but he shouldn’t just laugh when something isn’t funny. The conversation gets progressively more awkward as we discuss back and forwards how loud and how long he can laugh, and I’m still not convinced that he understands my point about only laughing either way when something makes him want to laugh. Still, it shows me he is thinking about what is acceptable and wants to do what is right. He’s even practiced how he will whisper to me to ask whether he is allowed to laugh during the movie.

I’m not convinced he’s ready for the whole movie experience, but he’s been obsessing about the new movie Hugo – with its trains and clocks featuring so prominently in the ads almost every time he watches TV – so maybe his love of the movie subject matter will be enough to motivate him to control his natural urges. That’s the hope anyway. Hope for the best, prepare for the worst. I’ve already given a lot of thought to best seating position; near aisles and far from other people, and am choosing a day and time that I’m hoping attendance will be low (I’ve even chosen the 2D version of the movie, to limit the new experiences and in the hope more people will choose the 3D version).

No matter how it goes down on the day, I’ll be proud of him for trying, because I know he will try, and it won’t be easy. I’m hoping that his occasional hum and flap will be forgiven by the audience, and not be met with the same hostility that is otherwise deserved by those who answer their cellphones in a theatre or shine a lazer at the screen; he wouldn’t be the first to break social expectations at the movies.

And I’m hoping that he’ll enjoy it so much that he won’t remember to ask me if it’s OK to laugh.

Every adult in his life – and a few children too I suspect – know that he is autistic. So I cannot control whether and when he hears the word, not for lack of trying though. I’m so mindful of him potentially asking about it that I’ve personally stopped using the words “autism” and “autistic” around him; he listens closely to those who talk around him and frequently interrupts with questions. I haven’t stopped using it because I think it is a bad word, or because I don’t want him to know he is autistic. Rather, I want to make sure that when he asks and when I answer, that both him and I are capable of making that conversation go well.

I’ve been slowly preparing him for the conversation by simple consequence of answering his questions about people in wheelchairs and blind people, diabetics, asthmatics, etc. Even when we talk about the fact that I wear glasses. Those conversations always take the track of me saying that some people are born with these challenges (or “problems” being the term he uses and understands), and some have accidents, and some get them as they age. That most people have “problems” of some sort, but that’s OK, because we’re all different anyway. That even twins are actually different, even though they look almost the same.

So it won’t be long before he asks if he “has a problem” too, and what it is.

But I’m not sure yet how I’m going to explain it to him, though I have a general idea. I’d remind him that everyone has special challenges they face – like mummy’s eyesight and great grandma’s knees – and that his challenge is called autism. That autism makes it harder for him to do things like talk and makes him do different things like hum and flap when he’s happy, but that it also has given him a great memory and has made him very good with details.

Already though I have a problem with that explanation, because I am worried he will think having autism means he has an excuse for not trying hard to improve his speech, or to modify his behaviour (for example, we’ve been working hard to get him to stop humming so loudly when others are trying to watch TV, and we’ve been trying to stop him doing a weird and annoying thing he purposefully does with his speech sometimes that he thinks is hilarious but is really irritating for others). He’s smart enough to see and use autism in this way. I need to find a way to convey that autism is an explanation not an excuse in this manner, and I’m still trying to figure out how to convey that subtle but important difference to a young boy.

It would be easier to do it when he’s older. So if it was more under my control – if I could have him not ask until he is older – what is the right age? I’ve read that you should have the conversation before puberty, since the child goes through a lot of personal changes mentally and physically at that point, and they need answers to why they are so different than their peers. But I think the driving force needs to be the individual child’s developmental stage; are they individually ready to understand what autism means (and doesn’t mean) in their life. Surely this won’t simply be “the age of puberty” for every autistic child.. or will it?

I don’t see not telling him as an option, because someone will tell him sooner or later, or he’ll figure it out, and I want to make sure the “revelation” is delivered in a kind and accurate way. I also don’t want him thinking that I held something back from him that he should have been told years before.

The fact that he attends a special needs school is helpful in some ways. He is surrounded by difference – by children with various challenges – making it easier to explain strengths and weaknesses and the normality (as such) of those differences in the world around him. In some ways being in a special class will, I think, hold the question of autism off for a while, since his difference from “everyone else” (a normal classroom full of NT children) is obviously less pronounced. However my son has figured out that he appears to attend two schools (the consequence of attending a satellite class) and that there’s something a bit different about his classroom compared to the other classrooms, which might also speed up the eventual more general question as to why his schooling is so different.

I don’t want my son to think of himself as significantly different, but I need him to eventually understand that he is; it will be important for his interactions with and expectations of others, and his understanding of himself. I want him to grow up unencumbered with these questions; I just want him to live a happy life with little in the way of limitations of what he can aspire to do with his life. The fact is that there are limitations, but I think him knowing that too soon or thinking about it in the wrong way, will hold him back from what he might have otherwise achieved and become.

And so these issues go round and round in my mind. I don’t know the answers, but I know I need to find them if they exist. Maybe there are no “rules” here; it’s just what works best for my own child whenever he’s ready to find out. But if you have answers or insights, or just some reassuring words, do share them. Maybe they will help me be ready at the same time as him.

I’m increasingly encountering reference to the Social Model of Disability, in autism rhetoric. It is most strongly associated with the Neurodiversity movement, and related groups (like ASAN). Without fail, every time I have seen the Social Model of Disability being used to discuss autism, I have seen quick and concerned responses from others who are outraged that something as serious and real (as opposed to mild or entirely socially constructed) as autism, could be referenced and re-framed in this way.

Image via Wikipedia

In this post I am going to try to make sense of those concerns, where they come from, and whether they are well-placed. First some introductory points about the Model itself.

The Social Model of Disability can be seen as a response to the more individualised and “normative” Medical Model of Disability. The Social Model shifts the focus from reshaping the impaired individual, to reshaping society (in terms of things like society’s response, attitudes and accommodation of those impaired persons). It defines disability in reference to how much society is accommodating the affected individuals, rather than as something defined by the condition the person has.

It does not necessarily come hand-in-hand with a complete reframing of the impairment carried by the individual, by which I mean, you can still identify an objective and serious impairment held by the individual, yet use a Social Model approach to what to do about it and how to talk about it. It may do though; various movements will and do deny existing definitions – and even existence – of the impairments that lead to disability, completely denying current terms and groupings and diagnostic criteria used to identify the conditions affecting people in the first place. This line of thinking will also challenge uses of the terms like “impairment” at all, choosing instead to completely redefine the condition as one only created by societal attitudes towards these people as “other” and unwanted.

Similarly, the Social Model of Disability doesn’t necessarily come hand-in-hand with saying the only correct response to a challenged person is to alter society and everyone else rather than the individual themself (for example, they may say society must be more accommodating but also there must be medical and therapy interventions for the best of the affected individual). Again though, some do take that more extreme approach, saying that the affected individual should not have to change or be forced to change at all; that it is only society (everyone else) who must be expected to change, in attitudes and accommodation towards those seemingly affected by a disability.

Basically, the Social Model of Disability then can be seen either as a guiding consideration that enhances our appreciation of the role society plays in the definition and actuality of disability, or it can be taken as a more extreme version that attacks the very definition of impairments (per se) and completely counters existing expectations that afflicted individuals do something to better fit into the world they exist in.

In that first guise – as an enhanced consideration of the role society plays in making disability worse – there will not be much controversy, since it would be fair to say that most people understand that accommodation and better attitudes towards conditions like autism, can and do make a very real impact on how debilitating something like autism can be. But in this softer guise of the model, it doesn’t tell us much we didn’t already know, and isn’t really a “game-changer.” It is the more extreme version and uses of the model that raise hackles (and I will soon get to why that may be, particularly for autism). I think it is important though to recognise that not everyone who refers to the Social Model of Disability is conforming to this more extreme version, and are often using it to rather suggest a gentle paradigm shift along-side continuing medical definitions and interventions at the individual level.

In order to understand why many in the autism community – most especially the daily carers of those with more severe forms of autism – take such exception to the more extreme Social Model of Disability, I think it is important to understand the rather common histories and daily struggles faced by these carers; pre-diagnosis, at the point of diagnosis and post-diagnosis.

It is a common experience for parents of autistic children to go through months or years of being told there is nothing “wrong with their child”; that what they’re worried about in their child is just a little slow development in their interests, abilities and speech. That better parenting or more socializing would fix the child right up. Eventually the child receives the diagnosis (which may take more than one professional, particularly if they see the wrong sort of professionals), and then those parents have to face family, friends and strangers sharing their wisdom that autism is not a real condition; it’s just a fad diagnosis tailored to bad parents or poorly performing children. After diagnosis comes the eternal fight for services and funding that you’re supposedly entitled to, so your child can get the help they need as soon as possible, to make the biggest difference possible for the brightest future possible.

So when someone comes along after or during all these struggles and adds one more voice to the “your child’s condition isn’t really a disability” barrage, it is completely understandable and predictable that there is going to be a backlash. When you fight to have your child’s condition acknowledged in the first place by professionals and those around you, then fight to access services, to then have someone tell you “it would all be OK if society just acted a bit differently towards your child” or “there is nothing wrong with your child, just something wrong with society”, it comes off like a threat to the very diagnosis and to the hard-won services. And in its more extreme form, that is exactly what the Social Model of Disability is; a threat. It tells you to get rid of the diagnosis category (in particular forms and places anyway), and to stop providing therapies to these people; to turn all funding and attention instead to the problems in society instead.

More than a threat though, it also comes across as (a) a complete and astounding denial of reality, and (b), an entirely unrealistic and arguably immoral response to impairment and disability.

It comes across as a denial of reality because being around the most severely autistic (and disabled more generally) makes it impossible to say “there is nothing really wrong here.” When basic self-care skills are missing to the extent that the person is dependent on others to change nappies well into their school years, or language is non-existent to the point that completely artificial modes of communication need to be intentionally (and often expensively) introduced in order to even figure out the simplest request, the notion that just changing society would make it all be fine, can appear ignorant and be quite upsetting. This would be a reaction to a more extreme form of the Social Model of Disability of course; not the form that accepts real and serious impairment (beyond the socially defined) and the need for interventions at the individual level.

It can be seen as an unrealistic and immoral response too. Unrealistic, because making everyone else in society change when the alternative is working to help that individual find a way to function within society as it currently exists, is the far more mammoth task, and unlikely to help that individual here and now (though it may improve their life years or decades from now; there is arguably no reason social awareness can’t be improved along-side an individual approach). The focus needs to be on helping the person now, in the world they find themselves in. Yes, lets work to make that a better world, but not at the expense of helping the person find their way in society as it currently works.

The “immoral” aspect of this approach comes in because the Social Model of Disability does not sit intuitively with highly valuing independence, which is a question of not just economics but a deeper set of (particular) moral beliefs. The moral concern here is that dependence on others – particularly on society at large (in terms of financial support, accommodation, positive discrimination etc) – is neither neutral nor something to be encouraged and celebrated. Rather, anything which encourages adults towards personal independence (self-care, financial independence, the ability to live one’s own life the way one chooses, etc), is a positive value.

However, it must be noted that the “outcome” (which is arguably unrealistic or impossible) of the ultimate implementation and realisation of the Social Model of Disability, would actually be heightened independence of those currently deemed disabled, since they would be more empowered to gain employment, and to move freely through society (both mentally and physically). Also, one could arguably question the meaning of independence in a society that taxes heavily already, where interdependence and dependence is already an oft-forgotten aspect of today’s modern societies; that the Social Disability Model just seeks to extend that aspect.

Again though, the increased independence arguably afforded by a Social Disability Model approach, can come along-side rather than instead of, an individualised approach to disability (where therapies and other interventions are also used to equip the affected individual). It is the “instead of” approach – where some argue that therapies, definitions, and interventions at the individual level should be abandoned altogether – that upsets carers the most.

From my own thoughts and understanding of these conflicts, a lot of confusion comes from inconsistent or unclear uses of the Social Model of Disability. At its extremes, the Model looks distorting, offensive, and dangerous to the wellbeing of the disabled. In its milder form it is a sort of paradigm shift – bringing attention to a different or rather additional way to view, understand and approach disability – and yet because it is milder, this form isn’t as important or “powerful” as its more extreme version (and is arguably redundant as a model per se, since it is downgraded to a “consideration” or “heightened awareness”, that can sit (merely) along-side the existing supposed “Medical Model”).

I do not have particular training or special insights (beyond Sociology being the Minor of my BA and my own experiences as a mother of an autistic child), that I brought into this post. This post is rather the result of thinking about others’ reactions, and indeed my own reactions, to encountering the Social Model of Disability rhetoric, particularly in regards to the autism community. And so, as ever, I do openly encourage you to correct me if I’ve got something wrong or misrepresented or misunderstood some aspect. But if I am incorrect, it is worth noting that those errors are made not just by me, and are symptoms of an oft poorly communicated rhetoric rather than ill-intent or lack of consideration on my behalf.

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Related and recommended reading:

• The Social Model of Disability: An Outdated Ideology? (pdf, Shakespeare and Watson)
• ASAN’s Discriminatory Agenda (Autism Jabberwocky)
• Showcase: Autistic Hoya’s “Disability is a Social Construct” (Autism Blogs Directory)
• Wikipedia entries for Social Model of Disability, and Medical Model of Disability