Getting on the right path

Getting on the right path

Over the last few years my view of autism has changed considerably. This is a brief history of my changing views and how those changes occurred. But first a big caveat…..

Big caveat time

The views below represent my own opinions about my own son’s autism. I think there is a good message that is applicable to other parents and neurotypicals in general. Many parents do get stuck in the “autism is bad” paradigm and I feel passionately that this is harmful to both themselves and their kids. BUT (and it is a big but) I am also painfully aware that autism is a hugely varied condition.

There are many kids and adults that are far more significantly touched by autism that the Bean is. Whilst the Bean is by no means only lightly affected he is none the less verbal, bright and we are confident that he can do well in school and lead an independent life. I understand that this is not the case for some kids on the spectrum.

I do not want to suggest that I understand what it is like to have a non-verbal, cognitively impaired child that will never lead an independent life. That is a set of experiences that I have no access to. I can empathise but I don’t really know what it is like. So for all my autism positive passion below I concede that this might stick in the throat of a parent struggling to come to terms with the fact that they will never hear their child speak.

So my “autism positive” message below is caveated by the fact that I know that it may be difficult to apply to the parents of such children. That being said, I do think that many parents of kids on the spectrum, and indeed the neurotypical population in general, have an overly negative view of autism and this essay is an attempt to redress that.

My journey to a positive perspective

In the beginning…..

Prior to autism entering our lives with the birth of the Bean, my view of autism was much like the majority of people. I saw it as a tragic thing, a bad thing, something that I definitely didn’t want my kids to have. This view of autism, although in my opinion wrong, was entirely natural given the information I had at that time.

We are all products of the society in which we live and the messages that society bombards us with about autism are largely negative. All of us have seen the films and documentaries that show what autistic people are like. Many of us will have read the newspaper articles about this marriage- ruining, life-destroying condition. Added to this is the pervasive and false idea that autism is a result of vaccines or some other toxic damage to the brains of kids. In short pretty much all the information Joe public gets about autism tells Joe that it is a really nasty bad thing.

So, like most of Joe public this was where I was at pre-Bean. As a compassionate human being I was sensitive to the plight of these poor kids and families. I wished them the best and hoped that science could find a cure or help prevent it happening in the first place someday.

This is where most parents start out. This is where most of the world’s neurotypical population are right now. And they are, in my opinion, mostly, if not completely, wrong.

The impact of autism

When the A bomb was dropped into our lives it was devastating. In my mind, autism was this big bad terrible thing. So when it first became apparent that the Bean might be autistic I did what any rational human being would do. I took my self by the scruff of the neck and shoved my head up my arse to avoid reality. I have written about this denial phase before. I think it is incredibly common but it can’t last for long and with me I guess it was only a few months before reality gave me a much needed sphinctal loosening and my head emerged blinking in to the dawn of my new reality.

A new dawn

This new dawn brought with it many tears and much sadness. I had to accept that my son had something “wrong” with him. That was definitely how I saw it at the time because that was what I had been taught autism was, it was a defect, a disability and a liability. So of course this made me depressed. Any parent who thought that their child was going to suffer because they had a “condition” would feel the same.

I don’t remember going through the anger phase of the 5 stages of grief but I do remember going through somewhat of a bargaining phase. I managed to convince myself that my son was only lightly touched by autism. I half fooled myself that he would be a lovable eccentric little professor type. A kind of uber geek that I could relive my child hood of dungeons and dragons nerdiness with. But of course the bargaining phase can’t last for ever either and so we then both entered into a depressive phase for a while before finally moving on to acceptance.

I think the acceptance phase only really started to properly kick in once we had the formal diagnosis. But even after accepting fully the extent of Bean’s autism and what it meant there was a further stage of evolution in my thinking. I’m not sure what to call it, but I moved from simple acceptance of my son’s condition to a position where I accepted autism itself for what it is. This was a gradual process over the last 18 months or so but it has brought me to where I am now. It is this final phase that is perhaps the most important, not only for my fellow parents but also for their kids.

Accepting the fact vs accepting autism

Most parents of autistic kids end up accepting the fact that their kids are autistic. A few may continue in the delusion phase indefinitely but these are rare. Reality has a habit of shoving itself down your throat regardless of the mental barriers one erects to block it out.  Once the facts are accepted however, parents may follow one of several paths.

Path 1 – Cure it!

Some go down the route of trying to cure their kids or at least normalise them. This will normally involve some kind of biomedical treatments, diet, supplements or the heavy use of behaviour modification therapies like ABA.

Path 2 – Prevent it from happening to anyone else!

Others go down the route of fighting against what they think caused their kid to have autism. The classic example is the anti-vaccine crusaders who fight tooth and nail to expose the evils of big pharma who damaged their kid in the pursuit of profit.

Path 3 – True acceptance

Both paths 1 and 2 rest on a basic assumption that there is something wrong with the child. And it is the destruction of this assumption that was the next phase in my own journey and the first step on the third path.  This path I will call true acceptance. It moves beyond merely accepting that one’s kid is autistic and instead is the process of accepting the autism itself. In order to do this one must unlearn pretty much everything the media has told you about autism. And it is this process that is the real subject of this essay.

The path to true acceptance

Of course knowledge is key here. Most of what most people know about autism is wrong. This is not to say that science has failed in this area or that there is any deliberate misinformation being spread (although there is in some cases as we will see below). It is more to do with the natural apathy that all people have when faced with issues which don’t touch them directly.

Most people simply don’t care about autism and so the only “information” they get is from TV, a few news stories and the odd documentary. The problem is that most of the time these sources get it completely wrong because it’s a complex subject and the agenda of most these media outlets is ratings rather than spreading the correct information. The truth about autism does not make for as good telly as showing some poor family with a seriously disturbed autistic child that constantly hitting his parents. Lots of autistic kids get very frustrated and may hit their parents but inevitably it is only the most extreme cases that the TV producers are interested in. On top of that the documentary will be edited and cut to emphasise just how terrible the behaviour of these kids are so they are falsely portrayed as monsters and freaks. “Freakshow TV” is big business and showing “autism freaks” is by no means the only example. Sadly in the war of ratings truth is definitely the first casualty. So invariably there is a lot of shit information spread, not by malice, but just by laziness, apathy and the overly commercial nature of our modern media.

Getting good information

The good information is out there and most parents of newly diagnosed kids will get stuck into reading many books. This is obviously a good thing but most of the factually correct books on autism still have a negative slant on autism itself. There is a still a prevailing attitude amongst psychologists and educationist that autism is a “disorder”, a problem and a defect. Whilst no reputable source of information will tell you that it can be cured there is always the implication that it would actually be quite nice if it could be.

Many books are very useful in educating oneself about what autism is, how it affects people and what changes one can make to parenting to better serve the needs of an autistic kid. However there still remains a danger that they will leave the reader with the idea that autism is a bad thing. Some exceptions in the autism literature exist and most of them have one thing in common, most of them are written by autistic people themselves.

Get it from the horse’s mouth!

Reading the words of autistic people about their autism is the single most important thing any parent can do. I will just repeat that for emphasis and I will put it in bold big text and underline it because it is so important.

“Reading the words of autistic people about their autism is the single most important thing any parent can do.”

Kids are normally diagnosed well before one can have a meaningful conversation about how their autism affects them and waiting until they reach their late teens is not really an option. So in order to learn about autism why not get it from the horse’s mouth? There are plenty of highly intelligent, articulate autistic people who are more than happy to educate us neurotypicals about autism.

Now no autistic person is going to be able to tell you exactly how it is for your kid. Firstly autism is hugely varied so one person’s autism may not affect them in the same way as another’s. But there are nonetheless some common traits. I saw this process of talking and listening to autistic people as clue gathering. I would gather clues about what might be going on for the Bean and then combining these clues with my own knowledge of my son to work out how to meet his needs better.

These clues have proved extremely useful in practical ways but at the same time listening to autistic people speak about their autism one slowly has ones misconceptions and false ideas eroded. It didn’t happen in one light bulb moment but over the course of a year or so my perception changed from “autism is bad” to autism is “just different”. I guess it’s the same process a racist or homophobe goes through when they a forced to mingle with the people they hate. As they begin to talk to them they realise that they are just human beings like them and the fear and hatred of “the other” vanishes. So it was with me when I engaged directly with autistic people in conversations.

I would encourage all parents of autistic kids and indeed any other interested neurotypical person to speak to the autistic community about how autism affects them. It is an enlightening journey and your mind will be changed I promise, but it is a journey with a few dangers along the way that may distract you from the path.

Dangers on the journey

So I have two things to warn travellers about to embark on this journey

1: Beware the the militant wing

There is a strong autism self-advocacy movement on line. Anyone seeking knowledge on matters of autism will encounter at some stage the militant wing of this movement. There are a lot of pissed off autistic people out there and with good reason. They have been marginalised all their lives and they have suffered. Many have suffered at the hands of their parents normally because their parents didn’t know how to handle their autism or followed one of the other paths outlined above. This means that certain elements of the autism community will attack parents at any opportunity.

In online conversations with this part of the autism community I have been labelled a bigot, an ableist (someone who is biased towards the able), a curebie (someone who wants to cure autism) and an evil person. Any misspeaking or use of “inappropriate” wording is leapt upon with an almost religious zeal as evidence of “heresy” and the “witch” is normally burned in a flame war. Please be wary of this and don’t let it put you off. Ignore the haters, they are just venting after probably having some very bad experiences in their lives. Don’t take it personally, just ignore their anger and engage instead with the autistic people who will treat you with respect.

The sad thing is that the angry individuals do have important information and could probably help out many parents. Unfortunately they are still caught up their own pain and so cannot communicate these ideas effectively. All they end up doing is alienating parents and pushing them onto one of the other paths described above. This is doubly sad as they themselves passionately and genuinely do not want this to happen. They explicitly state that they want parents to follow something akin to the path of genuine acceptance laid out above but their anger blinds them to the fact that they pushing people away from doing what they want. But such is the nature of anger in so many aspects of human life. Anger and fear really have no place in effective advocacy movements.

So if you encounter this hostility please do not let it put you off. There are loads of level headed, smart and thoroughly pleasant autistic people out there who really want to help parents understand their kids better. I have met many on-line and had one to one discussions on internet forums and by e-mail. There are always going to be some communication issues between autistics and NT’s but with a bit of perseverance a good useful dialogue can be established. This direct dialogue is far better than book reading in my opinion. It was the most useful thing to me. But if on-line chat and e-mail discussions are not your thing then there are many great autistic youtubers who have put together videos and first hand testimonies on all things autistic. I will link these below.

NOTE: This phenomena is by no means exclusive to autism advocates. Go on-line to any feminist, gay rights, race rights, or any other “rights” pages and you will find a similar small minority of angry militants itching for a fight. These people may have a legitimate grip against society but they are actually a hindrance to the objectives of the movement they are involved in. Like I said, anger has no real part in effective advocacy. Insulting the people whose minds you want to change is almost always counterproductive.

2: Beware of misinformation

There is still a whole heap of misinformation out there and some of it, unlike in the mainstream media, is deliberate. There is a whole flourishing industry of autism cures that are eager to grab an unsuspecting parent’s cash. These parasites rely entirely on parents following paths 1 and 2. In order to sell their shit they need parents to remain convinced that autism is a bad thing to be cured if at all possible. So you will see many well written and seemingly convincing articles presenting autism as just that. Check your sources. If it’s featured on ‘Autism Speaks’ or ‘Age of Autism’ then it’s probably a load of crap. Above all, before you take any advice on medical or therapeutic “treatments” for autism please check the science, not the pseudoscience, opinion editorial, clap trap you will find all over the interweb, but the actual peer reviewed studies that demonstrate the efficacy of the treatment. If it ain’t peer reviewed it does not count, it’s that simple.

Three Reasons why all this is so important

So why have I taken the time to write my longest blog post to date on this topic? Well I want to boil this down to three good reasons with the last being the most important.

One: The Mental health of the parent

Thinking of ones child as ill or defective is not mentally healthy for the parent. No one wants to have a damaged child and even though any such damage will not, I hope, diminish the love one has for ones kids it still weighs heavy on the parent’s mind. Parenting is a worrying business regardless of whether ones kids are “normal” or not. So if one is constantly plagued by the notion that ones child has “problem” or a “disorder” then it is clearly only going to exaggerate the natural instinct of parental worry. I know that when I started my autism journey I worried constantly. Some of my earlier posts here will reflect that worry. It was exhausting at the time. If, however, one can get into a healthy mind set about autism then much of this worry dissipates.

Now I’m not suggesting that everyone should just be all jolly and positive about autism and never acknowledge the down sides. Parenting an autistic kid is hard and the facts are that we live in a prejudiced world that is geared towards the needs of the neurotypical. Autism means both the parent’s life and the child’s life will be harder. There is no getting away from this fact. BUT these hardships are, for the most part, more to do with failings in wider society rather than anything intrinsic to the autism. So rather than wasting energy worrying about how to fix the autism it is better, and mentally healthier in my opinion, to worry instead about changing societies attitudes towards autism.

Two: Learning effective parenting strategies

I have touched on some of this above but really some of the most practically useful things I have learned about how to deal with the Bean have come from talking to and listening to his fellow autistics. Of course this learning can only really happen if one stops viewing them as damaged and starts accepting them as neurologically diverse humans instead. Viewed in this way they can then be rightly seen as the experts on the “what it is like to be” autistic. And getting a better understanding of the “what it is like to be” of autism is absolutely vital if we are to take effective action in being better parents, teachers, friends and co-workers to autistic people. It is in fact the failure of neurotypicals to understand and empathise with how autistic people experience the world that is the source of most of their problems in the first place.

Three: The Mental health of the child

But the single biggest reason for taking the path of true acceptance is the mental health of kids like Bean. Autism is not and never has been a mental illness but the prevalence of mental illnesses in autistic people is shockingly high. There is nothing in particular about having an autistic brain that would mean depression and anxiety disorders are intrinsically more likely to occur. This plague of mental illness in autistic people is entirely down to the prejudices they face due to the attitudes of others. Absolutely key to that is of course the attitude of their parents. If a parent can’t move on and accept that their autistic child is just different rather than lesser than his neurotypical peers then what hope is there that the child will have positive self-image?

If parents are constantly trying to modify the autistic behaviour and to normalise their kids then how can this not eat away at the child self-esteem? Essentially they are being taught that their way of being isn’t good enough, that they are broken and should fix themselves by behaving neurotypically. This cannot be good, ever.

This attitude is very similar to the psychological damage heaped upon generations of gay people by their parents. Even though the parents of the 60’s and 70’s many have accepted their children’s homosexuality as a fact many never really accepted the homosexuality itself. It was always something dirty, shameful and not talked about. These kids then grew up against a constant background of knowing their parents disapproved of who they were.

The parents of these children may not have said it out loud but secretly they were disappointed in having a gay kid. And guess what? Despite the veil of white lies they told their kids about how they “didn’t mind” their “choices”, deep down their children knew that they were a disappointment because of something they had no control over. Again the psychological damage from this is evidenced by the prevalence of mental illness in gay people of my generation.

A similar psychological battering is occurring today for many autistic children. Please do not mistake this for parent bashing, I attribute no blame here. The parents of today’s autistic kids are like the parents in the 1960’s of gay children; prejudiced only because they have been taught to be by society. There is no evil here, only ignorance.

Closing thoughts

My thinking about the nature of autism has changed dramatically over the last few years. The position I am in now is that I view autism as a neurological difference that is neither good or bad. But I must stress again that this is based upon my experiences of my own son and how his autism affects him. I find my new positive outlook helpful and I think it will benefit the Bean. I am also convinced that for kids like Bean a positive outlook on autism is the most useful mind set for their parents to adopt. But I am also painfully aware that not all autistic children are like Bean. So I feel the need to emphasise again to any parents of more severely autistic children that I do not in any way judge any parent or autistic person that does not share my outlook.

So I guess what I am saying is that I would encourage everyone to engage with the autism self-advocacy movement and learn about autism from autistics. This will hopefully foster a more positive view of the condition which will benefit all.

Links

Autism advocacy sites

www.wrongplanet.net (autism advocacy site run for and by autistic people. It has a big and active forum. I learned a lot here)

https://www.youtube.com/user/TheAnMish (YouTuber TheAnMish is a Danish lady who talks at length about her experiences growing up with autism

https://www.youtube.com/user/neurowonderful (youTuber and blogger Amythest Schaber talks about her autism, how it affects her life and also discusses many other autism and disability issues)

Books

John is an autistic man who has had a very interesting life indeed!

Raising Cubby by John Elder Robison (John is an autistic man who has had a very interesting life indeed! ). John talks about raising his son Cubby who was also diagnosed with autism. The story culminates in Cubby’s arrest on charges involving his love of high explosives and he faced 60 years in prison as a result.

Be Different also by by John Elder Robison. General advice and observations for autistic people, aspies and geeks in general!

The Reason I Jump: Written by Naoki Higashida an almost completely non verbal 13 year old Japanese autistic boy. This shows the rich emotional life that is going on under the “Fog” of autism and dispels the myth that non verbal autistics are stupid or not engaged with the world.