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An Autism Hub Update

6 Jul

Last month, it became even more apparent to me that academia appreciates the Autism Hub.  I’ve always enjoyed a large proportion of visitors from .edu domains at Autism Street, and I’m sure the same goes for much more than a few hub bloggers. I mention last month, because that’s when a group of several Autism Hub bloggers were invited to present at the USD Summer Autism Conference (a second invitation). I would be remiss if I didn’t extend a “thank you” to Steve D of One Dad’s Opinion for his tireless effort in organizing our participation there. I would be even more remiss if I didn’t note that some outstanding people (like Drs. Anne Donnellan and Julie Robledo of the USD Autism Institute) in academic circles seem to have an eye on the future – they both seem to have a keen interest in adults with autism, and what’s coming from the real autism community in general. Of course, having an autistic child, it’s difficult not to appreciate those whose conference was titled, “Work With Me, Not On Me“.

At any rate, thinking a little more about an eye on the future, I proposed a minor facelift for the Autism Hub. As many of you are probably aware, the Autism Hub is no longer run by Kevin Leitch, so I sent the proposal to the current Autism Hub administrators. I was happy to learn that the proposed changes were accepted and implemented.

Have a look for yourself.

I’d like to take a moment and acknowledge the efforts of Kevin Leitch. His orignal Autism Hub designs paved the way for a true community tool that has enormous value. I also appreciate the fact that he does not oppose such changes (as communicated in an e-mail) to his original designs. The whole situation kind of reminds me of that moment when a parent lets go of something with respect to teaching their children. I would assume he’s proud that the Autism Hub stands on it’s own, but I would also assume he’ll view some things as potential mistakes (mistakes that are the Hub’s to make and learn from).

A minor visual redesign and a few potential mistakes aside, the long-term importance of The Hub is clear in my opinion. It remains one of a few unique places on the internet where one can find some of the best blogging from autistic adults (and family members and students/professionals) who focus on the important issues surrounding autistic people and the autism community.

Many thanks to Kev Leitch and everyone who contributes with their writing (or other skills) to The Autism Hub.

Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

Neurodiversity on Good Morning America

11 Jun

Ari Ne’eman and Kristina Chew were interviewed for a segment of Good Morning America that aired today. Ari Ne’eman is the president of the Autism Self Advocacy Network and Kristina Chew writes the AutismVox blog.
NIH director Tom Insel was also interviewed.

Ari Ne’eman noted:

“Anti-cure” doesn’t mean “anti-progress”.

Unfortunately, the idea of “anti-cure” gets a lot of attention and I can understand why a news show would latch onto it. I personally see this statement as more important:

I can’t think of a civil rights movement thoughout history that hasn’t been faced with resistance and misunderstanding on the part of it’s detractors.

That’s what this is–a civil rights movement. A movement to say, “people are people”. It isn’t about autism: there are six billion different places on the spectrum of humanity, each spot filled by an individual who has rights and deserves respect. Some of the places on the spectrum need more support. Some, much more support.

It is not the “burden” of society to care for those with greater needs, as the situation is often represented. No, it is the responsibility of those with greater gifts to offer support to those other full members of society who are in need.

Kristina notes that “she is not suffering”. But, she goes on to note that parents need better supports and services and education for their kids. Who can argue with that?

Tom Insel, director of NIH notes that there are people with very great challenges on the autism spectrum. For those he states:

“…for whom we would love to have a cure, to at least get them to a point where they would be able to function as well as the people in this movement.”

Dr. Insel, thank you. Let’s help people make progress. This sounds very much like a neurodiversity parent who has stated:

What we wish to do is help them to grow to a point where xe can make such a choice. And make no mistake, if a cure was ever developed and if xe wanted it, I would ensure xe got it.

But, again, I think people will latch onto the “cure” question. The point as I see it is to help people make progress. The point is that especially for those who don’t make much progress, let’s make sure that they are given the supports be they physical, social, whatever it takes to live their lives with dignity. We are in the early stages of a civil rights movement.

Neurological diversity

28 May

It is a common tactic of some people who believe that autism should be cured at all costs to state that ‘the neurodiverse’ are a small minority of adults with Aspergers Syndrome, intent on preserving themselves at the expense of their ‘low functioning’ cousins.

Take a recent post from Harold Doherty railing against Andrew Solomon’s piece in New York Magazine:

The Alleged Autism Rights Movement isn’t much help for the severely autistic, the truly severely autistic….. like my son Conor who wondered (sic) across a busy main street oblivious to the dangers of traffic; or those like the 10 year old severely autistic boy in North Carolina who was struck by a train and killed Saturday half an hour after police received a report he was missing from his home. [Or] like the 50 year old autistic woman who could not communicate to tell the world she was being abused by staff in the residential care facility in which she lives in Long Island…

The sad fact is that, if Harold Doherty would allow himself to see it, no-one from ‘neurodiversity’ is suggesting that people like his son, the 10 year old boy he describes or the 50 year old woman he describes, should not be helped to the fullest possible extent. The trouble is, that Harold (and people who hold similar views) are so caught up in what they _think_ they never actually _see_ . The other fact is that the basic tenet of neurodiversity as _I_ understand the term is that people like Conor Doherty deserve respect. The whole ‘cure’ thing is a fairly trivial side issue. Respect is what comes first.

There is no cure for autism. Does this mean then, that we should not fight for the rights of autistic people of _all_ ages, abilities and expressions? That because they are not neurotypical they do not have rights? or deserve respect?

_That_ is what (to me and I think to very many people) neurodiversity is about. Take Alex Barton – the five year old voted out of his class. That is a _lack_ of respect. There is absolutely no justification for that teacher to behave in that way toward a five year old child. Neurodiversity says ‘this little autistic boy deserves to be treated as if he were the same as anyone else in terms of his right to belong’. I fear that some people who call themselves autism advocates think the problem is easily remedied by curing Alex Barton’s autism (hypothetically of course). I think that that entirely misses the point. People used to look for cures for homosexuality – that was wrong too. The _person who is autistic_ deserves as much of a chance to be judged for who they are with their own set of unique abilities, shortcomings and character as the person who is not.

Does this mean we should ‘leave the autistic child as he/she is’? Of course not! That is the largest of red herrings. If someone cannot communicate, you help them communicate. If someone cannot use the toilet, you help them to learn.

And then, when they have reached the upper limit of the potential for learning on each of these subjects, you accept that that is who they are. For some, that might mean they can now speak. For some it might mean they can barely use one Makaton sign. The _amount_ they have learnt is not the measure of how much respect they deserve. They deserve respect regardless. So we must all work to make the environment safer for young autistic children. We must all work harder to make autistic adults living arrangements safe. These are basic human rights.

It should also be noted that, far from being an autism related term, neurodiversity touches on a whole range of things. Of course, they’re not all called ‘neurodiversity’ but well….

Are voices a symptom of illness or a variety of human experience?

Research has shown that there are many people who hear voices, some of whom cope with their voices well without psychiatric intervention, it has also been found that there are many people who hear voices who can cope with their voices and regard them as a positive part of their lives. Neither is it the case that voices have always been regarded as a negative experience.

Throughout history and even today there are people who hear voices who find their voices inspirational and comforting. These are facts that on the face of it are hard to square with the extremely negative way that the experience is regarded by psychiatry. The researchers, practitioners and involved voice hearers believe it is mistaken to regard voice hearing as part of a psychopathic disease syndrome. Rather, they consider it to be more akin to a variation in human experience – if you like, a faculty or differentiation – something like homosexuality, that it is definitely not open to cure.

Thats taken from a page on Hearing Voices from the Mental Health Foundation. I would suggest that you go read that entire page. Like neurodiversity, some members of the hearing voices community acknowledge that their condition (or the condition of a loved one) can be disabling and distressing. However, they all realise that their can be a unique benefit and comfort in knowing who they are. They believe that who they are can be best expressed as a variation in human experience.

A little closer to home (for me anyway), there is something called Mad Pride which is a movement again neurodiversity in all but name. Its a loose conglomeration of self advocates who are (or have been) diagnosed with mental illness:

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

The people in all these movements are autistic, manic depressives, schizophrenics, tourettes and many more. None of us deny the bad things that being the way we are can bring. But we do not believe that the fact that we are the way we are means that we are second-class or fodder for nothing more than quack therapies and misplaced pity.

All these peoples – and many more – are the neurologically diverse. The Neurodiverse. Belonging to neither nation, nor politics but simply belonging to the simple idea that everyone is _not_ equal but everyone can advocate best for themselves if supported and respected:

“Broken down it means ‘speaking for yourself’, ‘communicating in other ways’, but it’s personal. For me it means that I can speak for myself. It means I’ve got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- ‘No, I don’t want tea, I want coffee, I don’t want sugar’- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me….

Jackie Downer, Down’s Syndrome Self Advocate.

‘Neurodiversity’ in New York Magazine

26 May

The journalist and author Andrew Solomon (author of the truly excellent and personally recommended Noonday Demon) has written a long piece for New York Magazine entitled The New Wave of Autism Rights Activists in which he paints us a picture of the heavily fractured tripod of autism activism.

Its far, far too long for me to summarise but I will try and give a very brief overview of how Solomon sees these three groups:

There are in reality three sides in this debate: those who believe autism is caused by environmental toxins (especially vaccines) and should be cured by addressing those pollutants; those who believe it is genetic and should be addressed through the genome; and the neurodiverse, who believe that it is genetic and should be left alone. These camps are blatantly hostile to one another. Gerald Fischbach, the scientific director of the Simons Foundation, one of the largest private funders of autism research, says, “I’ve never seen an advocacy community as intense and demanding. The mercuries get livid when people talk about genetics. The geneticists get furious when people talk about environmental toxins. And these activists get angry at both.”

That is a fairly accurate picture although not without it faults (ND’s believing autism should be ‘left alone’….not sure about that – and Solomon does qualify that statement later on)

I don’t really want to talk that much about Solomon’s piece. Its very, very good overall in my opinion. What I _do_ want to talk about is my reaction to it and how my slightly changed view of what ‘neurodiversity’ means to me is.

Ever since I had a large public disagreement with certain people last year about how I and other parents on the Autism Hub allegedly advocated (this disagreement led me to ‘outing’ myself as a manic depressive, handing over ownership and control of the Autism Hub and taking time away from blogging for a week or two), I have been thinking off and on about ‘neurodiversity’ as a practical construct.

I will come clean and say that Andrew contacted me for a statement about what I thought about neurodiversity as someone both neurologically different and also parent to someone neurologically different. That I didn’t make it into the final piece is testament to his skills as a journalist and my own growing ambivalence regarding neurodiversity. I started off by saying:

I felt that I had a good handle on the meaning of neurodiversity – to me it was simple: the diversity of neurology or, to lengthen that out to a truly epic state of pedantry, the many differing states of being that could be neurologically encompassed.

and I still do think that. I also said:

…what neurodiversity was, was a concept that could be embraced by people who valued difference and respected those who were different. It didn’t matter to me that those who embraced the concept were parents or professionals or autistic people or blind people or bipolar people or any mixture of the above. The important thing was that here was a group of people who were saying that being different wasn’t bad. That it (whatever ‘it’ happened to be for you) was a state of being worthy of respect in its own right. It is vital to me that my child grows up to think of xyrself as a person who is entitled to respect.

Beyond that, I am unsure what – if any – of the other things associated with neurodiversity apply to me. I am not ‘anti-cure’. I agree with Alex Plank who states in the article:

Alex Plank, who founded the Wrong Planet Website, which has over 19,000 members, says, “Since no cure exists, I don’t have to be opposed or for it. The thing now is to deal with the autistic people who are already on this planet.

What I want to do is raise my child to a point where xe can advocate for xyrself. If there was a cure invented tomorrow I would want xyr to able to ask the question xyrself: ‘Do I want this?’. This is because, as a parent, just as it is not my right to make xyr not autistic, it is neither my right to keep xyr autistic against xyr own wishes. I am a parent first and advocate second. Let me go even further. If a cure was discovered tomorrow I would not advocate against it. I would try and debate its use as something that should be used with extreme caution but I would not advocate against it point blank.

I come from a viewpoint that views a cure for autism as something that should not be necessary, not as something that should not exist.

What I mean by that is that I do not think it should be _necessary_ for someone who was autistic to be made not autistic in order to enjoy their life. I see plenty of autistic people clearly enjoying their lives and who they are. I want to see respect, tolerance and caring to come _first_ – not only after someone has been ‘cured’. This is (to me) at the root of the recent issue involving Alex Barton. One argument is that because Alex is autistic this is only to be expected. I disagree with that totally. I think that Alex was/is worthy of respect whatever his neurology. Its the same reason I don’t really like the heavy NT bashing that goes on at some ASD forums – two wrongs never make a right.

I also come from a belief that science is important. I therefore recognise that we cannot pick and choose what science we like and what we don’t. Science is either valid or it isn’t. So, when a scientist writes a _good_ paper that states MMR doesn’t cause autism I have to (by definition of science) agree with it. Likewise however, if a scientist writes a _good_ paper that states that Facilitated Communication is not valid, I have to accept that also. I do think that some neurodiversity activists are guilty of picking and choosing what science they like and saying its good and vilifying science that they don’t agree with. Which is fine if the criticism is valid. But not if it isn’t.

If a scientist works on a cure for autism should he be stopped? No way. To me, that’s pointless. If science is interested in a subject they’ll do it. Not always in the best interests of humanity I grant you but all the same – the debate about what to do with the results of said science are more practical than simply trying to stop it.

So, I’m not sure if I am ‘ND’ anymore. Or maybe I’ve just re-interpreted what I think being ‘ND’ means for myself. I don’t know.

Edit: Missed a bit

The closing of Andrew Solomon’s piece is a bit of a dichotomy.

Severe autism is a ghastly affliction that should be cured

I’m afraid that I entirely disagree with Andrew there. They key word is ‘should’. To me, the sentence would be more representative of my own personal definition of ‘nd’ if it read:

Is it important to cure ‘severe’ autism or look more carefully at how the rest of society operates around ‘severely’ autistic people?

.

However, it seems as though Andrew was reading my mind when he wrote:

It is unproductive to rail against the incurable; if you can learn to love it, that’s your best chance of happiness. For some people, the love is self-evident; for others, it is acquired through struggle; others cannot do more than pretend to it. Though neurodiversity activists can get in the way of science and sometimes wrap themselves up in self-important, specious arguments, they also light the way to such love—a model of social acceptance and self-acceptance that has the capacity to redeem whole lives.

Autism and Mental Illness

10 May

So, the family have been away for four days on holiday – our first ever holiday! A very, very good time was had by all 🙂

But in the meantime it seems like the Autism News Juggernaut hasn’t even slightly slowed. I came back to a deluge of emails on subjects touching on autism but one really caught my eye.

This is the story about autism being linked to mental illness:

Parents of autistic children are twice as likely to have had psychiatric illness, researchers have discovered…A child’s risk of autism was 70% greater if one parent was diagnosed with a mental illness, and twice as high as average if both parents had psychiatric disorders, according to a report in the Pediatrics journal. The finding suggests autism and psychiatric problems may sometimes have a common cause and genetic link.

I’m trying to get ahold of this paper to read for myself but its totally unsurprising to me that this should be the case. As some of you know I have manic depression (bipolar as its known in the US) for which I have been receiving treatment for approaching 30 years. I have long suspected that there is an overreaching link between many flavours of mental difference – a hypothesis, born out in the scientific work of David Porteous who has been involved in pioneering science regarding mental illness and DISC 1 mutations. Long term readers of this blog may know that DISC 1 has a high association with autism too.

Indeed, last year, David Porteous gave a fascinating talk at last years MDF Conference in which he talked about the DISC1 connection to manic depression and included ASD amongst the constellation of ‘mental disorders’ that have some kind of interrelationship.

So, this news was no surprise to me at all. Yet to some others it seemed as if it was a slap in the face. A comment from a reader who saw this item reported at CBC said:

So what is being implied here? That mental illness in parents is an indicator /cause of autism in off-spring, or autism in children causes mental illness for their parents? On behalf of parents of autistic children I feel offended by this type of garbage research…

Which is a frankly bizarre way to look at this study. The study itself seems to be saying only what is presented in its abstract.:

This large population study supports the potential for familial aggregation of psychiatric conditions that may provide leads for future investigations of heritable forms of autism.

Its step one. Nothing about _cause_ has been discussed as far as I can tell from reading the abstract. Does that make it ‘garbage research’? Hardly.

Mainstream Media & Autism

25 Feb

Autistics like Baggs are now leading a nascent civil rights movement. “I remember in ’99,” she says, “seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is.” The message: We’re here. We’re weird. Get used to it.

Amanda Baggs

Mottron draws a parallel with homosexuality. Until 1974, psychiatry’s bible, the Diagnostic and Statistical Manual of Mental Disorders, described being gay as a mental illness. Someday, Mottron says, we’ll look back on today’s ideas about autism with the same sense of shame that we now feel when talking about psychology’s pre-1974 views on sexuality. “We want to break the idea that autism should definitely be suppressed,” he says.

Laurent Mottron

….she went on an information-devouring rampage. “There’s such a variety of human behavior. Why is my kind wrong?” she asks.

Michelle Dawson

All this from The New Autism which you can download from the Wired website – or buy in its offline format.

Autistic Voices Not Saying What We Want

21 Feb

Yesterday I linked to a story about Carly Fleischmann, a 13 year old autistic girl who, up until recently has been uncommunicative.

All of a sudden these words started to pour out of her, and it was an exciting moment because we didn’t realize she had all these words,” said speech pathologist Barbara Nash. “It was one of those moments in my career that I’ll never forget.”

I’ve caught some email flak from a few people in the neurodiversity community for linking to this story. Mainly because of the closing words from Fleischmann:

If I could tell people one thing about autism it would be that I don’t want to be this way….”

I can understand how people would be upset with Fleischmann’s opinion. Many autistic people have spent a long time trying to raise awareness of their lives as something that they are happy to have and happy to be autistic in. I consider it vital that autistic people know that too.

But.

These _are_ Fleischmann’s thoughts and opinions. We should not and cannot discount, ignore or attack them. We cannot pretend that they are not equally as valid as any other autistic persons just because we don’t like their message. To say that they are not valid is to take the exact same stance as those who claim autistic people cannot know their own minds. Fleischmann knows her own mind and – right now – she doesn’t like being autistic and wishes she wasn’t.

Maybe with age will come a new self-acceptance. Most teens are full of self doubt and lack positive self imagery and I doubt Fleischmann is much different than most teens. But we also have to consider that she _won’t_ change her mind and that she will join with other autistic self advocates who may wish for a cure. We have to ask ourselves difficult questions about the nature of our advocacy now. I will be quite open and say that if my daughter ever wishes for a cure then I will try and help her get it. I will disagree with her decision and feel sad that she has made that choice – *but it is her choice* . Just as it is Fleischmann’s choice to not be happy with the fact she is autistic.

This is also why I am ambivalent about a cure. Whilst I do not think that a cure is a necessary thing for autistic people, I do believe that an individual has the right to do with their own bodies pretty much whatever they want. We have a society where men can become women and vice versa and no one aside from prigs and bigots object to this. This strikes me as the same. the issue with cure for me is that it must be very, very responsibly initiated. The issue of whether there will ever _be_ a cure is out of all of our hands. If a scientist wants to research a cure then they will.

We should – in my opinion – try and teach that there is nothing wrong with being autistic. Not that one cannot have a choice to not be autistic.

Dear Katie

16 Jan

As I write this, your Dad, Grandma, Grandpa, Uncle and Aunt are striving to bring you some justice. I don’t know yet what the jury will decide and I can only guess what trickery those who did you wrong may employ to wriggle out of their responsibilities.

However, I wanted to write you this letter as it occurred to me that although your picture sits on the bookshelf of our home, next to the photos of my own autistic daughter and although I have written about you from time to time I have never addressed a letter to you.

I wanted to tell you dear that I am so awfully sorry that I never got to meet you. Your Dad and your Grandpa came to see us and brought us some lovely photos of you. In all of them you were smiling and in all of them the adult with you – your Grandma, Grandpa or Dad – were smiling proudly. I can understand that Katie. You were obviously a little girl who anybody could be proud of. I hope to one day be able to tell you that when I can come and visit you where you’re resting now.

I also want you to know that your Daddy, your Grandma, your Grandpa, your Aunt and your Uncle and lots of your teachers spoke up for you sweetheart. They stood up to be counted and said that you were loved – adored – that the fact you were autistic should not ever be used as a justifiable reason for hurting anyone. They told the world what you were like. They wore pink ribbons to show the world that you were remembered. I wore my own pink ribbon everyday too.

One night, my own autistic little girl woke up about 3ish and we sat and I told her about you and about how much you were loved and how brave and steadfast your Daddy and your Grandma and your Grandpa were. Her favourite picture of you is the one where you are sitting on your Grandpa’s lap. I think it is her favourite as she remembers sitting on his lap when he and your Daddy came to visit. You are both little girls who see the purpose of a Grandpa!

Your Daddy is a hero Katie. A man who will not ever stop fighting for the rights of his daughter. A man who has stood opposite the person who wronged you so viciously, looked that person in the eye and remained dignified and composed. A man who has been buffeted from all sides and who simply misses his little girl and wants to do right by her. Your Daddy called me ‘pal’ and hugged me when he came over to see us. I am proud to be thought of as a friend by such a fine man as your Daddy.

The real tragedy is that any of this happened at all. There are no excuses for what was done to you. Whatever the verdict comes back as, the truth is that you were betrayed and snatched away from those who loved you. Those who wronged you – those with no answers – still try to wrong you. They blame vaccines. They blame autism. They blame mental illness. They look everywhere to place blame except where it deserves to be placed. In doing this they seek to cheapen and diminish the enormity of what was done to you. Your family will not let them.

Take care dear. I hope very much that one day I will be able to say some of this to you. I will bring you a toy from my girls and tie some pink ribbon around it. Until then please rest in the peace you so richly deserve. Your family continue to light a candle for your darkness.

Please Note: There is a living memorial for Katie should anyone wish to contribute.

The starting gun

10 Oct

One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70’s and early 80’s) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd (“Welcome to the Machine” was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I’ve been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song “Time” is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

These lyrics are quite literal, and it is not too difficult to catch the meaning. But I gained a bit more insight into these words, especially the last line, while watching a documentary of the making of the album (told 30 years after the fact).

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the “starting gun” had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

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