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Seeing the obvious

19 Aug

Two months ago I passed the half decade mark in running a blog about autism. I hoped when I started that I would be able to document my autistic child’s progress as xe developed and grew.

Somehow, through the efforts of others I got sidetracked. I no longer feel comfortable about blogging about xyr and that is nothing but a damn shame but it is still a reality. My wife is scared by the invective and hatred she reads in some people who disagree with me and we have an agreement now that I will not mention by gender or name any of my children.

This runs directly counter to my philosophy of trying to raise awareness of the good that can be available to parents and families of autistic people. Of the fun times – and there are many of them – as well as the heartbreaking times (and there are some of them too). I feel frustrated and angry that I have been forced by the irresponsible actions of others to not talk about the good thing I see in my life with autism. Maybe that was their reason for doing it. Who knows.

So, it was lovely this morning to see a story in my newsreader from someone who could see the good things. Who could see the obvious. Someone who chose to see the glass as half full.

The music was being performed live by two female artist of exceptional talent. Their music was sort of 70´s and 80s. They even took the risk of performing a Barry White Song, “My first , My Last, My everything” (I´m not sure that´s the real title), and they shocked me with how well they complemented his music. People were dancing. Old people and young people, but is was the “special” people who caught my eye; The down Syndrome people. They danced to the music and seemed so filled with the joy of the moment that it was contagious. I found myself dancing with them in my mind. They were laughing and moving, touching each other and their partners right at the moment when a spin or a turn was dictated by the music. As I watched I could not help but think of my own grandson, Anthony Adame, who is Autistic.

So maybe this writers choice of words wouldn’t be mine but there is no mistaking the vision of someone _who got it_ .

As I watched the crowd I noted many who looked upon these special people with sympathy and sorrow for them and their families. I know the look. I have often seen it while in the company of my own grandson Anthony. Only few ever intentionally mean to offend. Most simply do not understand the nature and condition of Down Syndrome, or Autistic people. They do not know the joy that many of these very special people have in their lives, or the wonder of living with, or being close to one of them.

Those words could’ve been lifted right out of my heart and mind. The joy is there. It exists. There is a choice that we can make as parents – do we fight a psuedo-war? A war which is simply psychological transference? Or do we see the fact that autistic (or Down Sydrome or Tourettes or Manic Depressive) people can see and experience happiness and bring joy to their families?

This isn’t a matter of religious style happiness. You don’t have to join hands with the world, hug a tree and sing Kumbya. Its really the simplest thing in the world. Its saying ‘my life is not like most peoples. I have hardship beyond what most do. My choices are limited. But look at the joy that my child/friend/grandchild/niece/nephew/cousin/child of a blogger from far away brings! Should I turn away from that? Or should I choose to participate in it?’

Its obvious isn’t it?

Happy Birthday Katie

22 Jul

Today, Katie McCarron should have been six. Just about three years older than my youngest and two years younger than my oldest pair of girls.

Its still difficult – impossible – to think of Katie without thinking that in a fair and just world, we would never have heard of Katie and she would be just another little girl, one amongst billions, anonymous and safe.

I know that Katie’s family will be going to her grave today and so I ask you that, if you are the kind of person who prays to pray hard for them. They must go through the pain soon of an appeal hearing as Katie’s killer seeks once more to escape her responsibilities. If you not the sort who prays, then send them good thoughts.

If you look on the home page of this site you will see a pink ribbon on the left hand side. This is my best graphical representation of the pink ribbon, chosen by Kassiane and worn by the McCarrons every day of the killers trial and by me too during those days as Mike and Paul brought some over to us when they visited us last year. Please click that ribbon for photographs of Katie. Remember her.

There is also a memorial grove where you can donate money for a grove of trees for Katie. Her dad and grandad visited the grove and saw the young living saplings that her life had inspired to be planted. They grow wild and free, as should a little girl from Illinois in whose memory they thrive.

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.

Thimerosal on trial- the incredible shrinking epidemic

13 May

The audio recordings of the first day of the thimerosal-only portion of the Autism Omnibus Proceedings hearings are now available here: ftp://autism.uscfc.uscourts.gov/autism/thimerosal.html. They are mp3 files.

Here’s some of what I heard yesterday via telephone and comments on what I think the parents’ lawyers seem to be implying now, maybe you will listen to the same discussion and take away different key points:

A lawyer for the petitioners (Mr. Williams, I think) said, as if a fact: there has been an autism epidemic, and he added that there is no such thing as a “genetic epidemic”.

They know this because no one could “miss” regressive autism in the past. I guess they might have missed other non-regressive autism and other ASDs.

The only kind of regressive autism they are interested in is the “clearly regressive” subtype, which they seem to be saying is about 2% or less of all ASD children born during the 1990s.

Apparently, they are only interested in the children of the “epidemic” era when kids got more thimerosal exposure.

There are so few of their target group that when these kids started to be “added” to the “epidemic” no one could see it happening, and likewise when the exposure to thimerosal dropped of precipitously, even though the numbers of these target group kids must have dropped off precipitously, no one could see that change in the larger epidemiological data.

So the epidemic might continue but it has nothing to do with thimerosal exposure now.

The numbers of “clearly regressive” autistics, however should be obviously diminishing. Because it’s a small group and not all of them “clearly regressed” following a vaccine containing thimerosal. These supposedly thimerosal-damaged clearly regressive kids must be disappearing by now, but maybe they’ve been replaced by kids who “clearly regress” due to another actionable agent. If they regress because of an non-actionable agent, like, say, oxygen or exposure prenatally to mom’s immune system, no one cares. Then logically, if all of the “clear regressing” autistics were caused to regress only by thimerosal, then there should be very few, or none, younger “clearly regressed” autistics in areas where thimerosal is not used for toddler age vaccines now and hasn’t been used in the past few years.

Apparently, they are claiming that thimeosal in vaccines only causes a subset of regressive autism, not including early-onset autism. So apparently there’s no way for a baby who got the birth dose of Hep B to be made autistic, since it can’t “clearly regress” shortly after birth. And if the baby only got the Hep B dose (if preserved by thimerosal), that alone couldn’t cause a regression months later. I think they are only interested in vaccines given right before a toddler regresses, at say age 12 months to 36 months.

Also, it seems that the PSC believes Eric Fombonne’s research is reliable when they want to make a point with it. They used his research to support the numbers of autistics who regress if I recall.

The transcripts will be available eventually (maybe soon), but we don’t know when. I think it would be interesting to compare get them to explain how many of this tiny group of ASD kids also have mitochondrial diseases or disorders. I wonder if they are trying to imply that the rest of the “epidemic” is caused by tuna mercury, chicken mercury or MMR, aluminum, assortative mating or what?

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.

What Makes You Smile?

2 May

This post is dedicated to a wonderful woman I know on another site who is terminally ill. She wants to be remembered for being happy and to go out with lots of shoes and a bang. So this post is just about being happy. Specifically, some of the things that makes Tom happy.

Tom loves the colour blue

http://i117.photobucket.com/albums/o65/bullet046/Picture002.jpg

 

He loves icecream

http://i117.photobucket.com/albums/o65/bullet046/ghost028-1.jpg

 

And walks

http://i117.photobucket.com/albums/o65/bullet046/ghost030.jpg

 

He loves his little brother

http://i117.photobucket.com/albums/o65/bullet046/ghost035.jpg

 

And he likes water

http://i117.photobucket.com/albums/o65/bullet046/radio010-1.jpg

 

He adores lifts

http://s117.photobucket.com/albums/o65/bullet046/?action=view&current=cooking015.flv

 

And he loves singing and action rhymes. He also loves looking at himself in the mirror, which is what he’s doing during these three clips.

http://s117.photobucket.com/albums/o65/bullet046/?action=view&current=082.flv

 

http://s117.photobucket.com/albums/o65/bullet046/?action=view&current=083.flv

 

http://s117.photobucket.com/albums/o65/bullet046/?action=view&current=084.flv

 

 

Kathleen Seidel

5 Apr

There’s no point at all in my rehashing what has happened to Kathleen. We all know. The blogging communities response has been swift and fierce – rightly so. I don’t imagine the lawyer in question has made many friends in his profession over the last couple of days.

I wanted to write a blistering, thundering post too because, believe me, that’s how I felt after reading the subpoena Kathleen received. I consider her a friend and ally of a good many years now – as I do Dave. They both do what they do because they care. They care about their own autistic children and they care about all of our autistic children and they do what is right – they question what is suspicious and they support what is worthwhile.

But I can’t write a blistering, thundering post. The last few weeks have been something of an education for me on how the world works. I am even having to be incredibly careful about how I write this post, a tribute to the tenacity of my friend Kathleen.

Where my American friends can rest easy in the knowledge that their law supports them in their right to speak freely, mine does not. Where Kathleen can put together such an excellent response, I – and all other British bloggers – cannot. Unless we are very rich, or insured or employed by a paper that is insured, we are totally stymied.

Please rest assured that I have very recent knowledge of this process. To the extent that whilst I can say that I have first hand knowledge I cannot discuss it, I cannot (and will not) name names. I don’t like this but I have no option. This is modern Britain. Bloggers can be silenced. I hope that Kathleen is never, ever silenced. The world needs truth and integrity.

From Mike McCarron to the Autism Hub

27 Jan

What follows is the text of an open letter, Mike McCarron, grandpa of Katie McCarron wishes to pass on to Autism Hub members.

An open letter to members of the Autism Hub.

I wish to thank each of you for your words; both about Katie and about people with special needs in general. In a world where differences easily become reasons to devalue people, your words have always conveyed respect, dignity and love for those with special needs.

I know that each of you from time to time question if you should express yourself and wonder if you are making a difference. Your opinions and descriptions of your travels in life have made a big difference to one grandfather and I suspect to many other parents.

In the days following my granddaughter’s death I was very upset. As I read comments from autism “advocates”, I moved from upset into anger. Many wanted to twist what happened to fit into their own agendas. All of you know the dialogue. I began to feel that all reason and common decency had been beaten out of society and replaced with hysterical and illogical screaming. Every time I would read some “advocate” say they could understand how a person could kill a child with autism I would bristle and await their self serving monologue of martyrdom. I even viewed a film clip that turned my stomach but it was receiving wide acclaim.

Then I encountered a different film, one of a little girl bouncing on a trampoline and I met Kevin. Next I found Kristina and the rest of your sites followed at different times mostly by reference from one of these two. During the extremely long trial process of twenty months I have visited your sites, some almost daily. Sometimes I would comment under a pseudonym but most of the time I just read and drew strength from your thoughts and your love. My interest in your posts varied by topic but I was always gratified and reassured by the love you expressed for your children and the respect shown for all people with differences.

I have had the pleasure of meeting some of you in person, I have corresponded with some of you, and still others I know only through your words on the internet. But words are so vitally important. The words used by some are frightening, intended solely for shock value, but are very divisive in the long term. Every time an “advocate” classifies autism as a fate worse than death they not only display the weakness of their own mind, but they do a terrible disservice to every autistic person. Your words and posts, firmly grounded in respect and love, foster the understanding needed for social movement toward improvement.

I sincerely hope that parents new to the autism community encounter the hub and your sites long before visiting many others. I find it strange to recommend sites that value human dignity; every site should, but too many don’t. That is what makes your sites so valuable. It seems that autism falls prey to every kind of con artist, they need to be exposed. It also seems that anything can be said about people with autism if the person saying it claims it was done to create awareness, they need to be set straight. Please continue to lead by example, do it as time permits but do what you can and what you already do so very well.

Sincerely,

Mike McCarron

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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