Alex Spourdalakis Killing Exploited by Neurodiversity Extremist Emily J. Willingham

Parents who speak honestly about the realities of autism disorders and the few journalists who dare challenge established views of autism causation are under attack .... again ... by Forbes Columnist Emily J. Willingham, formerly known, a few years before her Forbes career, as blogger Daisy May Fatty Pants.  Not content to express her legal opinions about the outcome of the criminal charges that have been brought against the accused killers of Alex Spourdalakis, his mother and a woman described by Willingham as Alex's "godmother",  Willingham launches into a tirade against parents who describe the harsher realities affecting those with severe autism disorders, parents of children with severe autism, children who do not sit as corporate trustees on organizations like the ironically named "Autism Self Advocacy Network" corporation:

"It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “ kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “ no supports” should certainly be pitied and not judged harshly for killing the “monster.”"

I am a Canadian, not an American, lawyer.  Whether in Canada or in the US though I would not presume to know the outcome of a judicial proceeding.  Since there does not appear to be any question about WHO killed Alex Spourdalakis,  or that his killing was intentional, and if those appearances are confirmed in court,  I assume all relevant evidence will be considered in determining what sentences will be handed out to the accused.  That evidence will probably include the stresses on those involved including the mother's mental health at the time of the relevant actions and the mother's views on why she killed her son.

As the father of a 17 year old son with severe autistic disorder, profound developmental delays and epileptic seizures I know that once I have passed on my son's life prospects will almost certainly diminish.  Now at home and school he is living a happy life by the measure of anyone who knows my son including those who know him best ... his mother and father.  My son is cherished and I would not and could not do what the mother of Alex Spourdalakis did but I can not stand in the shoes of Alex's  mother,  I have not lived the stresses and challenges she has faced.  

The realities of life with a severely autistic child can be very, very stressful and it has been often in our household.    Some people break under pressures.  To date neither I, nor my wife have broken.  As a lawyer I have some advocacy skills and I have been active in advocating for early intervention and school services for children with autism in our province.  Some people have also flattered me as being of strong character .... others have simply pointed out, probably more accurately,  that I am just stubborn. 

I am continuing to advocate for early intervention and school autism  services and for adult autism residential care services.  My autism advocacy efforts have received some modest recognition as a New Brunswick recipient of the Queen Elizabeth II Diamond Jubilee Medal:

I do not mention my modest accomplishments for the purpose of self aggrandizement.  I mention them because despite the challenges faced in our home arising from caring for the severely autistic son  we love I also have some advantages, as a lawyer with an advocacy career,  in coping with those challenges. Not all parents enjoy similar advantages in dealing with the stresses and pressures of raising a child with severe autism disorders. 

 While attending a law school class reunion brunch several years ago I brought my son Conor with me.  I didn't know if, or for how long, he would be able to manage the event.  As it turned out he loved it. The ball room in which the brunch was held, my classmates and families present were quite orderly and the food was excellent.  Conor was quiet and enjoying the view when a waitress at the event approached our table and asked if he was autistic.  I answered yes but asked her how she knew since he had been sitting very quietly, happy and I thought unnoticed.  She replied that she had 3 children of her own.  I have never forgotten that encounter or the realization that for her as a waitress, without a professional advocacy background,  and with the challenges of raising not 1 but 3 autistic children she probably faced greater challenges than I could imagine.  I have tried not to judge other parents of autistic children the way Willingham and other business sponsored "autism is a condition .... not a disorder" Neuordiversity ideologues do.   

Whether Willingham and other business publication writers,  vaccine industry sponsored writers and Neurodiversity extremists like to admit it or not when people receive an autism diagnosis, which is a medical diagnosis,  they do so because autism is a disorder not a "condition".  The term is now formally known as Autism SPECTRUM DISORDER with three levels of severity with respect to the varying levels of support in daily living required: support, substantial support or very substantial support.  My son requires very substantial support as it appears Alex Spourdalakis did. 

It would be better, instead of using his death as a launching pad for attacks on parents who do not share her Neurodiversity "autism is a beautiful, alternate way of thinking" ideology  if Willingham would actually use her bully pulpit at Forbes to explore the harsh realities confronting those with severe autism and their families and actually advocate for services for them.  But no I won't hold my breath waiting for such a great awakening.  

A US court will determine the fate of the mother of Alex  Spourdalakis.  I suspect, despite pressure from Forbes' columnist Willingham and other business sponsored writers and Neurodiversity ideologues the harsh realities of the life of Alex Spourdalakis, his severe autism disorder and the impacts of that disorder on his family will become known to the public. 

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Facing Autism Parenting Challenges? Try A Bit of Janis

As a father of a soon to be 17 year old son with severe autism disorder symptoms and profound developmental delays I understand fully when parents discuss those challenges on line.  (He is also a very solid 6'1" and still growing). I do not mock other parents and accuse them of engaging in self pity, or of demonizing their children,  as do many in the Neurodiversity movement including the "Thinking Persons" at the TPGA.  

I understand fully what it means to try and help your adolescent son when he is hitting himself in the head in the middle of the night or when at a younger age he slipped out of the house unnoticed, crossing full parking lots and a busy main street on a busy Saturday afternoon.  I understand and I communicate these challenges so that people in the world at large are not misled by the media that adores the high functioning success stories or the DSM5 teams that are now redefining the most severe intellectually disabled autistics out of the spectrum as the only co-morbid condition group specifically and expressly targeted for exclusion.

I communicate these realities to be honest to my son and present honestly the challenges he faces even as those with his symptoms are being abandoned by the inglorious drafters of the DSM5 autism spectrum disorder.  To those who think otherwise I hope  you have a good day.  

When I feel the stresses of caring for a severely autistic, profoundly developmentally delayed son, as happens on occasion, I do not seek support on the internet.  I find my joy in my son, not in his disorder but in him, the pure joy in the many good times and even the joy that comes from trying to help some one as best you can overcome the severe challenges they face.  

I also, like any human being, find joy in diversions, including music.  Some musicians have the ability to lift any spirit, to assist in facing any challenge.  One that I have always enjoyed since the days when she was with us and blessing us with her talent and her incredible heart and soul was ... and still is ... in her music ... Janis Joplin.  If you're feeling a bit worn down try a bit of Janis.  I don't know for sure if it will work for you but it sure works for me. 

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Severe Autism Parenting Reality: An Old Fear Returns

Conor walking with Dad this morning. I often let him walk a  

distance ahead of me so he can make decisions and demonstrate his 

knowledge of routes and how to get home on his own if necessary.

Today an old fear returned and grabbed me firmly.  It was the greatest fear I have known in my life.  And it came back with full force. 

I have written a couple of times on this site about the time several years ago, when Conor was much younger, and he left the house unnoticed while he was in my sole  care.  When I realized he was missing I ran around the house, down to the Saint John River which was close to our home, across a nearby busy parking lot and then back home before calling 911. The 911 operator told me he had been taken into a nearby convenience store by a good Frederictonian who had stopped his vehicle to remove Conor from traffic to safety.  The man left as soon as I arrived and identified myself and he new Conor was safe. He left without waiting to be thanked. 

Today, years later, I was again the adult in charge and I was again distracted by a business call.  When the call was ended and I looked for Conor I realized he had again left unnoticed.  I ran outdoors around our house calling his name without spotting him,  then ran back upstairs to speak with his brother who had been busy in his room and hadn't heard him go out. When I ran down the stairs Conor stepped into the house and I was again relieved.  I believe he had just been in the back yard starting to leave via a shortcut to one or our regular walking paths and heard me calling for him. 

Conor is no longer a small child physically but he has serious cognitive challenges and severe autism disorder. When we go on our almost daily walks I will often let him walk ahead of me, within eyesight, to let him make the decisions about the direction to go to find our way home.  I have done so in the hope that if he does leave unnoticed he will know his way back which I believe he does. For that reason I  was not as fearful, or not quite as fearful, when  I couldn't find him quickly today.  I admit it though.  I was scared again.  And thankful when Conor returned to the house. Very thankful.

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Conor and Mom Ignore Autism and the Heat and Have Lots of Killarney Lake Fun

Conor and Mom beat the heat, leave autism behind and enjoy some Killarney Lake fun this morning. In the pictures with his Mom Conor demonstrates once again that autistic kids can be very affectionate and caring. Dad was having fun too taking pics and once in a while (when Conor stopped and waited) catching up.

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Autism Parents: Take the Time, Make the Time

The photos that follow show my  walk from my home to my office in beautiful Fredericton, New Brunswick a place I am happy to call home, a place that allows me to take the time I need and want for me and my children. The weather this morning was beautiful and very pleasant for mid December.  With snow coming soon I could not resist the urge to get outdoors, to take the time to walk to my office instead of driving, to take the time for myself.  My office is only a few minutes drive, literally 3-5 minutes from where I live.  A walk is only 15-20 minutes.  

This morning I brought my camera and extended my walk time to and from the office, from Nashwaaksis on Fredericton's north side across the bridge and the St. John River to my office on the south side,  and back, but it was worth it for me.  Everyone needs time for themselves and parents of autistic children, parents of severely autistic children have their specific need for time for themselves. This morning I took some and I am happy that I did. I encourage every autism parent to take time for themselves, to make time for themselves.

During my walk I reflected on how lucky I am to live where I do, here in Fredericton, New Brunswick, Canada. Life is challenging at times as it is everywhere but generally we are very fortunate and I know that and reflected on it as I walked. I also thought of how lucky we were when we moved from Burlington, Ontario back home to Fredericton, New Brunswick in 1997, just one year before Conor was diagnosed with his autistic disorder.  Lucky not because Fredericton is better than Burlington but lucky because the move allowed me to spend much, much more time with both of my sons as they have grown. Lucky because I have been able to dedicate significant portions of my daily life to both my sons and in particular the challenge, as well as the joys, of raising our severely autistic younger son, who is now, in every physical sense, a strapping young man.

When we lived in Burlington we enjoyed the town. It was a very pleasant community in which to live.  Both our sons were born at the Joseph Brant Hospital in Burlington.  But my work at that time took me from the western edge of Burlington to downtown Toronto. Whether by car or by Go Train that meant a 2 1/2 hour commute each way, each day or 5 hours a day, 25 hours a week. Since we returned to Fredericton, when I drive to the office and back it is usually no more than 5-10 MINUTES of commuting each day.  And when I feel like it I can walk and enjoy the time.  

I can not imagine how different life would be for both of our sons, and particularly for our younger son with his severe autism and intellectual disability challenges, if I had not been part of their lives for those 25 hours a week over the last 14 years as they grew from little boys to young men.  I just can't imagine. 

I know I am very lucky and I believe my sons too have been fortunate to have had their Dad with them during these many hours and years of their journey from childhood to manhood. I know not everyone enjoys such good fortune but I encourage every autism parent to take whatever time, to make whatever time, they can for themselves and their children. 

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An Autism Taboo That Needs To Be Broken

Break The Autism Taboo

Taboos, of autism and parenting at Ramblings of a Stone Age Queen is one of the best commentaries I have read about the realities of parenting an autistic child who suffers from meltdowns that can result in aggression towards herself and the parent who cares for her.  This is not a fluffy opinion piece by a high functioning autism researcher sitting in his lab. This is a concerned parent talking honestly about the harsh realities, the thoughts that spring into her mind in the midst of being attacked by the child she loves.  This is the story of mandyque; one parent who has stood up and said "this is happening to me".

I encourage you to visit mandyque's blog Ramblings of a Stone Age Queen where the commentary is posted. If you are a parent of a child with autism leave a message of support. If you feel up to it tell your story. Help mandyque break a taboo that needs to be broken.

Following is the entire comment. I was going to post an excerpt but this is such an honest, courageous and compelling story that I am reprinting it in its entirety. It is a story that should be known:

"I have had a particularly difficult weekend with my autistic daughter, and it occurred to me that there are some things that only other parents of children with autism understand properly. But even then, there are things which are left unsaid, because we are too scared that we will end up facing criticism, or worse, social services involvement. But if we aren't honest about what is going on, we carry on suffering in silence, convinced that we are the worst parents and that we will be hated and reviled if we dared to speak of our deepest fears.

On Saturday night, daughter had a major meltdown. She became so upset and confused that she attacked me, lunging forward and clawing at me, and she spent over and hour screaming blue murder. I have no idea what the neighbours must have thought, she sounded like she was being brutally tortured. The fact is, this hideous scenario occurred because she wouldn't go in the bath, then when I said it was time for bed, she wanted to go in the bath, but it was too late. Perhaps I should have given in and bathed her anyway, but it's all part of her needing to learn flexibility, that she can't always have her way, and besides, I was exhausted already and needed to go to bed myself.

Finally, I was able to get her upstairs, but she lunged for me again, trying to push me out of the way, clawing at my arms and chest and screaming. This is where the shameful part really kicks in. In any other situation, if someone attacked you, the fight or flight reflex kicks in, but of course you can't fight back when your disabled child attacks you, because that is a child protection issue. Nobody considers that it's also a carer protection issue, and no carer wants to admit that they had the urge to fight back. I didn't want to harm her, and I didn't, but the urge was there. The urges included wanting to tear at her hair, putting my hands on her neck, slapping and punching her. In any other situation that would be accepted as a normal reaction, but when it's your child, it's met with shock and concern that you are an abuser. I repeat again that I did not act on these impulses, I did not harm her, but to be put in that situation is an unbearably hard thing for a parent to cope with.

Eventually I managed to get her into the bathroom, where she sat on the toilet, refusing to move for over half an hour, while I got out and waited on the landing. When she is so wound up, she needs a lot of time to calm down, without stimulation and attention, so away from the TV and computer for a start! I sat on the floor, shellshocked and shattered by this latest episode and hoping that she wouldn't come and attack me again. She screamed and screamed for a while until exhaustion made it subside, but she kept winding herself up and having a little scream, which I had to ignore, while making sure that she can't come downstairs again. Finally she calmed down enough to realise that she had to go to bed, and bizarrely, once she had calmed down and come to terms with the situation, she just got up and went, as quick as that. She just stood up and walked into her bedroom, where we had a hug and a goodnight kiss and she went to bed. And that was the end of that, for her at least, the whole situation, over and done with. In the meantime, I'm ready to crack up, I don't know whether to cry or scream, I'm completely dazed by the whole event.

But how do you deal with this sort of situation? I know how to calm her down, I know that putting space between us works, I know that she needs a low stimulation environment and time to process information, but what do you do when your child attacks you? Especially as they get older and stronger, you can't pick a 15 year old up and put them in time out like you can with a tantrumming toddler, you can't lock them in somewhere because that is imprisonment, and you certainly can't hit them back. Manual handling courses are available for teachers and professional carers, but parents are not allowed to do these courses for insurance reasons. There is no protection for the carer at home. Parents of teens and young adults are actually told to call the police, but what is the point of that? Criminalising a disabled young person who isn't being violent because they are bad, but because they are confused and upset? Terrifying them with a visit from a policeman, who we all know is there to catch bad people and stop them doing bad things by putting them in jail? There's little point in calling on help from social services, you end up being made to feel that you are a failure as a parent instead of being supported.

The only people who truly understand are other parents who suffer the same way, but none of us get the help to deal with situations like this. A friend of mine today asked if I had a panic button, similar to the ones that elderly people use to get help, but there is no such support that I know of. What is the answer? I'm damned if I know, but taboos are there to be broken, and if one person can stand up and say 'this is happening to me', maybe others won't feel quite so alone."

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Autism's Wandering Children

A recent occurrence in Indiana is another reminder of one of the realities of raising autistic children. In some cases, a parent has to be on 24/7 alert to make sure that the child, even when he or she becomes an adult, does not wander away into danger. I have posted on this blog several times about news such as that of an adult, severely autistic man, Keith Kennedy, who wandered away from camp into the woods for a week or the child who wandered off into traffic never to return.

I have also talked here of my own experience several years ago when Conor wandered away from the house while I was occupied on a business call. He wandered across a busy parking lot and main street where he was picked up by a good samaritan and taken to a nearby convenience store where I was able to recover him after calling 911.

In the recent Indiana case an exhausted mother, fatigued in part by allergy medications, sat down on a couch and fell asleep. When she awoke an hour later the front door of her apartment was open and her child was gone. The child was found wandering and police were called who in turn called child protection. While the police waited for Child Protection Services to arrive other police officers found the mother driving around looking for her child.

Local CPS is continuing to evaluate the case in Indiana but this is one autism parent, in another part of the world, who understands the challenges faced by that Indiana mom. The reality is that some autistic children require constant supervision and there are times when life, a phone call, fatigue, an emergency, or a dozen other reasons, does not always cooperate.

autism

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When You Have An Autistic Child

Any reader of this blog knows of my disgust with some of the high profile media coverage of autism disorders and autism realities.

From the CBC, command central for the "positively unrepresentative of autism disorders" Neurodiversity ideology and the quirky, quarky rhetoric of Michelle Dawson and Dr. Laurent Mottron, to CNN star Dr. Sanjay Gupta's odd obsession with Amanda Baggs, an alleged autistic person whose ""autism insights" and scripted autism videos seem contrived to many autism parents, the most prominent television "news" machines seem intent on Hollywood "Rain Main" style coverage of autism than on reporting the grim realities confronting many persons with autism disorders and their families. The print based media offers more diversity of autism coverage. While the barely autistic, we don't want a cure, movement gets glossy magazine coverage there are some reality based autism news features in the print media.

Faces of Autism is an excellent, reality based, spectrum wide, treatment of autism from journalist Pete McMartin and photographer Glenn Baglo in the The Vancouver Sun which first appeared in April 2007. And today the Montreal Gazette offers an understanding report on some realities facing parents of autistic children. Reporter Elaine Creighton and the Gazette tell it like it is in Raising an autistic child is not easy featuring Ghislaine Noé the mother of a young non-verbal autistic man now living in a rural residence.

The story tells of frightening moments like realizing her then 5 year old son was walking on the roof top to the everyday challenges of brushing teeth and public behavior issues to the sad fact that her son was at some point too much of a challenge for her in an urban environment.

Ms Crieghton and the Gazette tell of the love and compassion this mother has for her autistic son and provides a rare understanding of the challenges of parenting a child with autism:

"When you have an autistic child, you must be mindful of everything. "


autism

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