Another Autistic child has died… stabbed… multiple times, in the chest, by his mother. Alex Spourdalakis was 14 years old.
“The mother of a 14-year-old with severe autism who was found stabbed to death…” ~ Daily Herald.com
But what about Alex?
”The mother of a 14-year-old with severe autism…” ~ Pantagraph.com
But what about Alex?
“First degree murder charges have been filed against Dorothy Spourdalakis, the mother of a teen with severe autism…” ~ abclocal.go.com
But what about Alex?
A young man. Stabbed. Not once. Multiple times.
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of happiness.” The United States Declaration of Independence – 1776
But what about Alex?
In the 237 years since those words were first written we have failed miserably at putting this idea into practice. All human life is not treated as equal; apparently it is not “self-evident”. We continue to live in a world where equality is still desperately sought by a great many.
For those who are born unable to speak and Autistic, those among us, who are given the label “severe”, their lives matter even less. We not only think of ourselves, (those of us who are able to speak and whose neurology is not Autistic) as superior, our lives deemed more worthwhile, but we are reminded of our superiority every single day of our existence, just as those who are born unlike us are told in myriad ways how they are not.
Autistic people, particularly those with multiple physical challenges, are spoken of as “burdens” to society, they are talked about as though none who are Autistic are capable of understanding the words being used to describe them. They are not consulted. They are not listened to. For the most part they are being ignored. And those who are raising their voices in protest, who dare to speak out against the crimes committed against them, they are met with resistance, anger, indignation. They are often ridiculed, dismissed, silenced or simply ignored.
When a parent murders their child, we cringe in horror. When that child is disabled we sympathize. The media brings in psychologists to help us understand. We dissect the child’s history, we look for clues, what could have provoked a parent to do such a thing? Sometimes we conclude the parent was crazy and unfit, but not before we make sure there was nothing unusual about the child. As we rally around, trying to distance or identify with the parent, Alex and those like him are all but forgotten. His life is seen as an example of what some must endure. His life becomes an illustration of that burden on society that everyone wishes would just go away.
But what about Alex?
What about what Alex had to endure? What about what it must have been like to live his life for those 14 years? Where are the news articles discussing who this young man was? What did he love? What were his passions? What made him happy? What must it be like to not be able to speak? Did he communicate through typing? Did he read and write and if so what did he like to read? What was his favorite subject? Did he love music? Did he like animals? Was there something special he enjoyed doing?
What about Alex?
You are brave. What about Alex will haunt me today as it does whenever I hear a parent has killed their autistic child. Your words will echo in my head for weeks. I will find a way to talk about Alex and autism many ways over. Youre message: Do not get so hung up on what the parents burden is to bear, but instead, where is Alex’s voice? And this is a message that needs to gain momentum. Who is speaking (and listening) for our kids. Parents are the first line if defense, sometimes the only one. Keep writing, it makes a huge difference to so many.
Thanks so much for the encouragement. Feeling very sad for all the Alex’s in this world.
Definitely words that will be resounding my ears today as well! I never watch the news, this is probably part of the reason why. 🙂 very sad.
Spot on. Unfortunately, even with cases that don’t involve autism, the focus is almost always primarily on the perpetrators, not on the victims. What makes it so much more horrible when it’s a child like Alex is that, once again, the world is turning its back on him.
Right, the final act of silencing…
God have mercy on us all.
“Did anyone try to help him communicate, despite his inability to use verbal language? Was he taught to read or write? Was he given the chance and opportunity to learn?”
This is what always haunts me when I’m getting told that a child is uncommunicative or violent because of the severity of their autism.
Did anyone try to teach them an alternative method of communication? Did anyone respect or try to reciprocate in whatever way he was trying to communicate? Did he have options for getting his needs and wants paid attention to other than lashing out?
Or was it decided long ago that because he was severely autistic, he couldn’t learn or understand? Or that only spoken communication was worth anything? Or that defeating his autism was more important than giving him another way to be understood?
This is what haunts me too, chavisory. Thanks for writing this, Ariane.
Thanks for commenting Katrina…
It really is imperative that those who cannot use verbal language be given alternate ways to communicate. We have to agree that this is a fundamental right for all human beings.
“What about what Alex had to endure?” I haven’t been able to get this question out of my head since hearing about his murder. That question and the questions that chavisory asks above are so haunting and painful and sad.
When I went to find an image of Alex to post with this story, I was even more horrified. A 14 year-old boy photographed naked, locked in restraints with a sheet thrown between his legs… it is beyond belief… I was going to use it and then… I just couldn’t. It felt like a further violation of this boy who happens to be just one year older than my son. He is still, very much a boy.
And also a minor by law. Can you imagine the outrage most parents (not to mention the general public) would feel if their 14 year old son was photographed like that and the photo widely disseminated in the media? The level of dehumanization surrounding this is so, ugh, I can’t find a word bad enough.
That’s exactly the word I kept repeating as I saw the photographs – dehumanization. This is the type of thing they use to justify wars…
I can find a better one for U to post even though He is sleeping and still doesn’t have clothes , but He is covered ! let me know if U want it . And YES , WHAT ABOUT ALEX …. My son is 11 and still doesn’t have any way to communicate .. He is not learning nothing We have tried .. BUt How could he , if he feel sick and in pain ? This is Alex’s story as well . Very sick boy and no one would help him to feel better . May be , if he felt better he would have been able to learn communication and wouldn’t attack his caregivers … It is a vicious cycle of misery for ALEX and his mother ..
Thank you, Ariane. I can not believe there are people, not just people, but parents of autistic children, out there right now writing about sympathizing with the mother, how desperate she must have been. I just read something of the sort, and I am too angry to even go on with that.
Just, thank you for your voice of sanity.
(((D.))) I cannot go to those sites.. I’ve been told, but I can’t do it…
I’m so sad and simply exhausted battling other parents as to how no matter her stress, MURDERING him is NOT an option. And once you get into the details, it’s worse. You see she had options, but wanted HER options. With no thought to what was best for Alex. No one was thinking of that! Instead of them removing this child from her altogether (there were grounds), they battled with her and he didn’t get what he needed. Yes, what about Alex, ,indeed? She stabbed him to death, an act of anger, but gave herself some pills, to painlessly “sleep”. That speak volumes. Understanding her stress, justifies nothing in her actions. He is dead because SHE killed him, not the media, not the hospital…his own Mother. This is sad and has worn me out. I’ve endured being shouted down and patronized because I don’t “get it”. Really? Do you know me? I’m so sick of this!
Yes, it is so awful and draining… No words left…
No you don’t get it! Get over yourself and see this for what it is!!! It’s not about you and what you think or feel! It is about a mother who had no help, and institutions is the help that was offered, some help.
No, it’s about a teenager who was murdered, actually.
Practically only when the victim is severely disabled, is the story of a murder made out to be about the perpetrator rather than the victim.
Lynn – Actually this post was about Alex. There are plenty of threads (I’ve been told) going on right now on Facebook where you can discuss the need for better services, but this post wasn’t about that. This post was about a 14 year old boy who could not communicate by speaking and as far as I know wasn’t given the means to communicate any other way, who was murdered by his mother, that’s what this post was about.
Yes You are exactly right. If you have not been in this position you cannot know what it is like. His mother did not restrain him in the bed- THE HOSPITAL DID!! Did the doctors scope him to see if he had gut problems? Did they give him meds to help the pain and ease the aggression- no!!! The mom had no help. She was pleading for help but none came. If you are an autism mom you must be proactive, research and find out what is going on with your child. If you dont there is limited help for your child. Main stream drs arent going to help. It is a sad place we live in.
I hope that in the nine years since you posted this comment you have come to realise that this post was about Alex Spourdalakis, and only Alex Spourdalakis, a 14-year-old autistic young man who was murdered by his so-called mother because she thought that better than accepting the help offered to her. There are no words for those who would excuse such a crime even if the facts had been as you claimed.
CMK, do you have a child with severe disabilities? Do you live in an area fortunate enough to care about people and offer services? If no to the first feel lucky. If yes to the second, feel lucky even more. If the first answer is no you have no business criticizing this mother. Spend your energy changing things to make the world better for people like Alex.
And I may be incorrect but the pictures displayed in the hospital are how he was treated by the hospital and executed by an autism support network to help them both! And also nobody knows what kinds of ‘services’ she was offered or what they entailed. Of course the gov would say she declined services. They don’t want to have to step forward and help, that would be too much.
JC – I’m trying to understand what you are saying here… are you suggesting Alex’s mother was justified in murdering her child?
Just a reminder, JC–most of us here have BEEN children with disabilities. (“Severe” is often in the eye of the beholder.)
Just as a quick reminder to all who comment – this is a really loaded topic for everyone, particularly those of us who either are Autistic or love someone(s) who is/are. Please be respectful of one another. It’s okay to have different points of view, but please, please let’s all be aware of each other and use our words carefully.
JC…my question exactly. What is your point? And yes, I have an ASD child and severity doesn’t matter. I don’t need to qualify whether I suffer enough to you or anyone else, to say MUDERING your child IS NOT an option. Why is this hard to understand? Adults need to get out of their suffering and concentrate on the child’s suffering. He suffered more, I can assure you. He was an innocent child and we are discussing HER feelings. And there are holes in her story, all over it. So, I totally am not buying it at face value. Where was HIS voice? Unbelievable that anyone would think one should remain silent, in light of this crime, because, well, it was hard for her, cut her some slack. She wasn’t completely without ANY resources, that is simply not true, if you go further back in her journey, you will see that.
We could not know his feelings, he was NON verbal, but my bet is he was begging for someone to end his pain. Why do you think he was so aggressive? He was in extreme pain that’s why! No one says it was right for her to murder him. And remember, the wonderful mainstream media only reports what they want you to know, vary rarely is it EVER the whole story. Don’t believe what they say cause just like everything else they report on, it is biased and one sided.
Lynn – “We could not know his feelings, he was NON verbal, but my bet is he was begging for someone to end his pain.”
This thinking is along the lines of saying someone who’s been brutally raped was “asking for it” or the wife who is beaten and left to die by her disgruntled out of control husband “provoked” him. Please rethink what you are saying here.
I am in contact with plenty of non-speaking people, all of whom are able to communicate. This idea that just because someone cannot speak means we cannot know what they are thinking and feeling is simply not true. A great many people have learned to communicate who do not speak. This is something I write about often and will continue to, because it is so widely misunderstood. The first section of my “Resources” page begins with blogs and articles written by non-speaking Autistic people.
“She didn’t say no!” is a thing I heard as a kid out of my parents’ mouths regarding their friend of the family when I had selective mutism and when too upset couldn’t talk.
So, yeah. “Didn’t say no” =/= consent.
Allow me to repeat that because evidently Lynn does not understand that: “Didn’t say no” does not equal consent. I might be too scared to say no to a mugger, but that doesn’t mean that I consented to giving them my wallet. I might have been too upset to word when a boy 10 years my senior came into my bedroom when I was 5, but that doesn’t mean I consented to what happened there. Alex may not have been able to say no to his mother when she came at him with a knife, but that doesn’t mean he wanted to die.
“Didn’t say no” is not equal to consent. Especially when the person is in a vulnerable position with respect to their attacker. Especially especially when they can’t talk.
I’ll bet he was desperate for someone to ease his pain. *That does not mean killing him!*
(And yes, there are people saying it was right to murder him. I’m not going to link to those things, lest they get any more attention, but yes, people are saying that. DON’T EXCUSE IT.)
AZ – you should practice what you preach… You are rather transparent
Oh Vicky you have no idea how hard I am trying. If there is something specific you’d like to point out where you feel I am NOT practicing what I’ve asked of others, please let me know. But as stated, you aren’t giving me much to go on.
All I can think about is Alex, who happens to be the same age as my son, who is also severe. All I know is that my heart breaks for Alex.
Oh and BTW I live in Texas, one of the worst states for services for disabled kids….it’s in the top 5, I believe. And they continue the cuts, so yeah…know a little something about that.
Texas ranks worst in …numero uno in services health services and delivery…and then there’s this:The Texas Medicaid law for the disabled and poor offers one of the most limited health care programs in the nation, and more than 25 percent of Texans do not have health insurance of any kind, which is the highest uninsured rate in the nation
Read more: http://www.nydailynews.com/life-style/texas-ranked-worst-nation-health-care-gov-agency-article-1.1109193#ixzz2W1xvdtue
And people make it work, I know those with/without healthcare insurance…those on Medicaid make it work as best the can, their kids are getting services and many they actually need, even in this crappy state. There are ways…
Last night in our neighborhood, a bicyclist was struck and critically injured by a hit-and-run driver. On our local blog, the conversation immediately became about the safety of cycling in the city, with many people saying, “Well, maybe the cyclist shouldn’t have been driving at night,” or “Maybe the driver really didn’t know they hit someone and sped off unaware they’d hurt someone.” Only a few posts were sympathetic to the cyclist, who might actually die.
The point I’m trying to make is this: right now a boy with autism is dead, stabbed multiple times by someone who was supposed to be looking after him. There will be plenty of time and resources spent on the mother, from psychological assessments to possible incarceration. The media will follow her story because, well, autism.
In the meantime (and I think the point of this blog post), the boy is still dead. He’s gone. There will be time to look into the how and why. There will be, I’m sure, sympathy for the mother and what she endured, probably a lot of it justified.
But right now, at this point in time, can we just consider this boy? What happened to him? How his last minutes must have been? Can we think about the child here? I’m sure that’s what his mother is doing right now. Or she should be.
ASD Dad – thank you for this. Yes, exactly. This post was about Alex. I wanted to write something that focused on him, not his mother, not his Godmother, just Alex. Just for Alex.
This make me sick, so unthinkable. I am a mother of a severly disabled son. He is 22. It still amazes on how many people ignore my son as thought he is not here. Most want me to put him in a home. Out of sight, out of mind. Sad folks
Peg – thanks so much for commenting here.
I LOVE what ASD Dad, wrote, because this is about, Alex and should be. And Peg, I know even if your sweet boy can’t express it, he is SO grateful for your love and protection. He deserves no less, from anyone. People can be so cruel and that’s awful. ((hugs)) to you, Mama.
Actually Ms. Zurcher you didn’t focus on Alex. You’re first words discussed how his life may have ended from media accounts. It’s not about what Alex liked or how he lived his life. You made a choice to address this from a point of view as an outsider…..one who also may have done nothing to assist this family that pleaded for medical assistance for their son over a series of the last six months. The question should be where was everyone who could have assisted Alex in getting appropriate medical care. This doesn’t assist him now nor the other Alex’s that are in need of medical care. It places blame and provides judgement at a time when Alex has yet to be laid to rest. For any to even consider taking the life of someone else and then themselves they would have to be desperate and not thinking rationally. To get to that point takes much and we need to look at that as well. Because that is part of Alex’s story also. May he rest in peace and may those that tried to assist tell this story in a way that will assist other families in how to meet their child’s medical needs because there is no hope for these families otherwise to obtain what is medically necessary for their children.
You are so right people who are different are seen as less than I feel like people don’t take me seriously because I’m in a wheelchair.
Thank you for your post. I have followed Alex’s story since it appeared in the community and was heartbroken by this sad ending. I am also the mother of 2 non verbal severely affected boys. The fact that I do not know what my sons are thinking and feeling is the hardest part of autism. They can request food with a speech device, that’s about the extent of the communication. I also have 2 girls, one w Aspergers so I hope that in the face of this tragedy that people never forget Alex and all that he went through before it ended in this way.. Families like ours need help and support and this will only become greater as they get older. I’d like to ask the media outlets that refused to cover his plight when he was trapped in the hospital while the biomedical
Community rallied to help – “what about Alex”. All they want to cover is the sensationalism that surrounds his death. Too little too late.
These families need your help. Awareness and acceptance is so difficult in this world and unfortunately they are not given the tools they need. Let’s Help the Alex’s in this world rather than do nothing.
Because no one talked about Alex, as a person, so I’m sure she doesn’t know much about Alex, the person and not the tragedy, Carolyn. So tired of this, stop judging meme. It is WRONG to murder your child because you are stressed!!!!! AND….it was violent, no love involved in it. He can’t get help now, can he? He’s dead and shouldn’t be and that is the fault of his 2 caregivers. She wanted her protocol, she devised with so-called ASD experts and people in Age of Autism. She wanted it the way she wanted because she thought those things would cure him. That’s where the clash started. I fault the system for not removing him when she became unreasonable. They chose to fight with her and he suffered, as a result. There is ALWAYS hope, she just gave up because she chose to give up! I have friends with really sick kids, who haven’t slept in YEARS, so I don’t want to hear it. Alex, deserved better than he got.
Exactly so “What about Alex?”. Where were people to intervene that Alex was sent home with appropriate care? Don’t make this about the manner in which he died. Answer that question and also this one. “Where were the independent advocates to ensure that Alex has appropriate medical care?” Where was DHCS? They let a child that was so behaviorally challenged that he had to be restrained in a locked room in a hospital go home without appropriate care or assistance for the family? In the past police were called seven times since November 2012 to assist to transport this child for placement. It took 6 to 8 officers to do so. So how did they think sending him home was the answer? When he was in the hospital during one visit there was an armed guard in the room. But it was okay to send this child home with his mother? Yes this is about Alex and the lack of support that was provided to him and the many more individuals like him in this country who cannot obtain assistance daily.
OMG, Ariane. What a horrible story. And this comment strand is pretty hard to read as well. I don’t have an affected child, but I would still say this: no parent, no person, can afford to get into a conversation about degrees in regards to who deserves to live and die. And assertions like “My bet is he was begging for someone to end his pain”. Holy Mother of God. Sanctity of life. Sanctity of all and every life.
I’m heartbroken for you Alex. I don’t know what else to say. To think of your pain and fright when you were ALREADY confused and hurting, is unbearable.
I’m sorry you were failed, little man.
For those sympathising with her? You simply disgust me.
This is too sad. I just keep thinking about how he must have felt or what he must have been thinking while his mother was stabbing him. What a horrifying way to go. I know this post is about Alex, as it should be, I just can’t help noticing the outcry over blame placed on parents when their kid elopes contrasted with the sympathy that occurs when the child dies by their own hand?!
Ariane, Thank you for writing But What About Alex? I only wish some of the people who commented here understood the message you are conveying. I was torn about commenting on Alex’s tragic death, but like you I felt compelled to post for Alex.
This is what I posted in my Facebook group.
I haven’t known what to say as the tragic details of Alex Spourdalakis’ death have begun to unfold. My heart aches for this child, and the hell he suffered in the months (who knows, perhaps years) leading up to his death. I know that I saw a mother, seeking help from the Autism community, and media. I know that many of us reached out in the only way we knew how. I know that it wasn’t enough.
I am the mother of three children with disabilities, I will not try to make comparisons. This is not the disability Olympics. I know the challenges my family has faced and continues to face. I know frustration and yes, I know despair. I am not going to be an armchair analyst and try to figure out why this young man’s life was ended so violently. What I am going to do is remember Alex for the rest of my days. I don’t know how or if his tragic life and death could ever be reconciled, but I know that as a community, we can do more. We can do better, for Alex and all of our children, friends and family navigating life with Autism. RIP Alex, you are finally free of all restraint. ♥
I’m sorry, but the comments basically supporting euthanization are ridiculous and cruel. Even if for some god forsaken you actually think that’s acceptable, how do you get past the stabbing? Would you stab your dog to euthanize them? This was a real complete PERSON.
Yes Alex was a human being and deserved the appropriate medical care he needed. That is the story that needs to be told. Not judgement nor any other comments from those that do not know the full story or who did not step forward to assist when others including his mother, literally begged for assistance. Do not judge what transpired here. Especially if you did not step forward to advocate for Alex specifically to obtain the care he needed. As was indicated “What about Alex?” Indeed.
The story of Alex hasn’t been told. The story of his mother has. My entire point is that if someone is going to claim this as an act of mercy, they are completely delegitimized by the fact that he was stabbed. It doesn’t matter how many times she asked for help. How many times did Andrea Yates ask for help? It’s neither here nor there.
She was seeking help from a certain, some may say, radical part of the ASD community, not the ASD community, as a whole. There were options, this wasn’t it. And condemning these actions are not , armchair quarterbacking. There is no excuse for this murder.
My name is Carolyn. As I’ve indicated there is no need for insults here. You indicated there were other options. What are those when a child who is so strong it takes 6-8 police officers to get him to a hospital, is denied the medical care he needs and is sent home?
CMK if you are referring to my comment, you have misunderstood my sentiment. I said nothing about “armchair quarterbacking” and I certainly do not condone what this mother did. I just feel the focus needs to be on Alex, and how we as a community can pull together to help others like him. This is about Alex.
So what do we do to stop this happening again? It seems to have the same ingredients as other cases; a non-verbal child, no communication; severe behavioural issues, a parent with limited means, external support and perhaps limited insite.
I’m thinking of the future.
Just because someone didn’t give money or blah, blah, blah doesn’t mean your voice should be silenced, how dare anyone suggest that. when I started to feel very negative and in despair, I attached myself to good positive groups and didn’t get sucked into other people’s agendas and put my CHILD first. I did my research, I asked questions, I looked for and found resources and advocates for MY CHILD, that were accepting of her as an ASD individual. I notified family and friends and those who were negative, were shed. There is help, there are resources out there. But if what you want is to follow a particular agenda and not keep your mind open, then you may end up in some bad places and not get what you need. You have to step back from your own emotional stuff, so your mind is clear and be there for your kiddo. There are no magical cures or elixirs or protocol. You child’s ASD is their own. There is so much wacko crap out there parents, if not careful, will get steered down some very bad roads, which can lead to very tragic circumstances. You have to use your BRAIN, not your emotions, on this journey. Not easy, but necessary. You have to be able to weed through the nonsense. And accepting that your child may remain non-verbal or remain with some stims or whatever and NOT be cured is a must, even if there conceivably was a cure. Love, acceptance, support. Sure there aren’t enough resources, but there is help, but if you are looking to completely have it your way, you will be sorely disappointed. There are middle grounds and compromises. And I did follow and read her story, I just draw a different conclusion because I am putting ALEX, first.
Well said. Very well said.
This is about this blog. Not about you. It’s also about Alex and people hoping on the bandwagon afterward. Thank you for following Alex’s story and hopefully now you and others will be asking why he was sent home without appropriate care in place. No need to also become insulting. Discuss this as an adult. We need answers to the quesion “What about Alex?” So discuss him.
Very well said, CMK. As the mother of 2 autistic children, I can only echo what you’ve said: as a parent you need to step back from your own emotional exhaustion, accept that there are no miracle cures (no cures at all, really) and most of all, accept your child as they are. People who post here and suggest that a strong, non-verbal child displaying agrressive behaviour is “begging to die” or “couldn’t have been handled” in any other way and this was the only option for his poor, downtrodden mother, are completely wrong in every sense (moral, ethical, intellectual, etc). Really, it boils down to this; if you cannot raise a child, for whatever reason, you should find someone who can, and remove yourself from the situation. I don’t care how aggressive or difficult to communicate with they might be, no child deserves death. That’s the end of any possible justification for killing Alex.
And to the person who so callously and ignorantly suggested that he wanted to die–no, I’m sure he didn’t. When my children scream and throw things and strike themselves or me (sometimes with objects, sometimes hard enough to leave bruises) and they are in such torment they lose whatever language they have, they don’t want to die; they want whatever’s upsetting them to stop. Alex was probably much the same way. He probably wanted to run back and forth in a field, waving his arms for fun, or he wanted to go swimming and terrify everyone by submerging himself without any fear of the water, or he wanted to listen to the same song on repeat for 2 hours solid, or…. you get the point, I hope. Just because people around him couldn’t figure out what he wanted (what he needed) doesn’t mean he wanted to die. I would question your motives for saying that, actually–are you suicidally depressed yourself, since you think it’s such a normal/common thing to wish for death?
Thank you, Amanda. Shoot, lots of NT kiddos will kick, bite and throw major fits, as well. Usually if overly tired or too much sugar, wrong food or whatever. It just seems to me, these are people who just can’t truly put their kids first and are in a perpetual state of why did this happen and how can I make it go away. If you let go of the negativity, accept your child, so you can fully ENJOY your child, UNDERSTAND your child…join THEIR world, they ARE in there waiting for you to join them. You’ve got to grow up as a Parent and do it. You can’t keep whining and chasing rainbows. Oh, Alex COULD have been helped, no doubt in my mind, IF those with the power had the courage to remove him from his “Mother”. Parents HAVE GOT to stop getting caught up in these groups that feed a sense of hopelessness, UNLESS you do it their way. So that when it doesn’t “cure” your child, you are beyond devastated. I hate these types are the first you bump into when you enter this journey and many become so grounded in fear, they forget to do the research and THINK. And those groups feed fear, blame, and anger. That’s why you’ve got to use your head. Your child is Autistic, THAT is who they are, accept it and start to join your child’s world and see how quickly they change. I know firsthand. Keep the faith, keep hope….NEVER give up!
CMK, you just keep speaking the truth. I want to back up your point of “seeing how they change” when you meet them halfway, so forgive the excessive length, please.
My children are 7 and 5 now, and the best thing I ever did for either of them was unintentional, unguided “intensive interaction”. Before my eldest was diagnosed, before I had all the leaflets and print-outs and professionals to explain to me how she was rubbish at different things and how much effort it would take to make her “function in society”, I used to copy her and try to get her to let me join her activities; in time, I began to understand her better than any of the professionals around us did.
By the time she got her diagnosis (early diagnosis, barely age 2–she displayed very obvious, very severe signs of autism) I knew her too well to listen when I read that she was “doing repetitive things without meaning” or that she “didn’t even know why she did the things she did”. She had her reasons. Her little rituals had meaning to her, and by extension, to me. Instead of trying to prevent her from flapping her hands with excitement, or making non-verbal noises of delight, I joined her, smiling, telling her she was a good girl, and in spite of all the times I got frustrated and let her down, my imperfect patience was rewarded.
When she began speaking again, after nearly 3 years of almost total silence, one of the first phrases she tried out was “good girl”. I will never forget bringing her something, a bottle I think, and her little voice exclaiming, “Good girl!” as a replacement for thank you. And then my little boy, when he finally began speaking, swiftly informed us that he was a “good boy” every time he did, well, anything. And when he was 3, and eventually when she was 6, they started using (with varying frequency) the word “Mommy” to get my attention. Nothing compares to that. Nothing can ruin that. And I know that the best thing I did for them was avoiding the majority of the “advice” and “help” and “support groups” out there, and letting my children set the tone for our life together; and no one will ever convince me otherwise.
You’ve hit the nail on the head by saying that they’re right there, waiting for you, and all you have to do is join them.
Thank you, nostromo. This just CAN’T become the norm. Bring in other ASD individuals, they were/have been a HUGE help to me. They are even with severe kiddos, because many were severe as children in many areas and can give incites, but they often get shouted down. Who would know better what your kiddo is feeling, what is setting them off, but one who is affected by ASD, directly? The first I experienced hope was when I stepped away from many of the whiny parent groups and really sought out actual ASD voices. Don’t get me wrong, many parents have been very helpful, but a lot more, had me depressed and in despair. They were so focused on cause and cure and angry, it rendered them, just unhelpful. No one is entitled to a perfect child or life, that exists only in the movies. These are the cards we’re dealt and you either fold, or play the hand like you have a full house. I choose the latter. My daughter has made so much more progress, with a much more positive attitude and outlook from her family.
I think this is spot on. The first and most important thing we can do for Alex and others like him is to in no way excuse his mothers behavior. I can think of a lot of other steps that could be taken but they involve money and political will I’m not sure this country is willing to invest. The most important step is fighting for the recognition of autistics as valued people, not tragedies.
Indeed…porterhouse2010, this country hasn’t the will to REALLY do this right, but if we foster an atmosphere of acceptance and respect, we maybe able to make some steps in that direction. There was just no general respect for him as a person. Not speaking does not equal, non-thinking and lack of feeling or understanding. Parents of ASD kiddos can’t even seem to agree on this, so we are a long way from any real strides, I fear.
Sorry I flubbed your 2012…oops!
Oh, I think you can be forgiven 😉
I’ve been disrespectful to no one Carolyn. I am asking why he was sent home with his mother, yes. I’m not making this about me, I’m saying over and over FOCUS ON THE KIDDOS. It’s about them. I’ve done nothing to you, your anger is obvious and misplaced. I’ve insulted no one. There is a lot of craziness out there, that people should avoid… Nostromo asked for solutions….I tried my best. I’m trying to provide positive support and hope, not whining, which I’ve heard way too much of over this past year, since her diagnosis. There was more than one way for Alex to get what he needed, is the point. The no help at all ever from anywhere and all wanted him and her to suffer is just not true.
I appreciate your desire to acknowledge Alex in all of this rather than focus on his mother. However, I think you should reconsider how you described Alex, and change the way you talk about any person with special needs in the future. Alex was a child with autism – not simply autistic. Please refrain from using a label first when discussing someone with a disability. They are people and deserve to be acknowledged as such before any talk of their disability. As a mother of a child suffering with autism, I appreciate it when people acknowledge that my son is a person first.
Tara – please read the following links written by Autistic people regarding what they prefer when it comes to person first language.
Beat me to it! I think this is such an important point, and I really appreciate your advocacy in regards to it. I’d also like to thank you while I’m at it for being the first place I read about the presumption of competence.
Aw… thank you so much for this. Really appreciate hearing when someone has benefited…
Here’s the deal, if you were writing an article/post about someone with Down Syndrome or CP, how would you describe them? Person or disability first? Just food for thought. I’m fine with agreeing to disagree. However, I know quite a few people (not children) who would rather be recognized as people prior to being described as having autism; therefore, supporting your verbiage with those links doesn’t really hold any clout with me.
Tara – I am actually not interested in whether what I write holds “any clout” with you. What I am interested in is writing about Autistic people in the way that a good portion of THEM would like to be spoken of.
Tara, you should always respect what an individual wants in terms of what language you use about them. But a *great many* autistic people prefer being called autistic rather than a person with autism. This is in deliberate recognition that being autistic is intrinsic to who we are as people, and “person with autism” makes it sound as if autism is something that can or should be separated from us, when we don’t believe that it is. Autism is part of our humanity. There is no reason to separate the two.
And different disability communities have different preferences, and that’s fine. Most other people with disabilities seem to prefer person-first terminology. The Autistic and Deaf communities are in a minority here, in which identity-first terminology is preferred.
Disregarding what people have said they wish to be called is disrespectful. If the people in your life prefer person-first language, that’s what you should use for them. When other people prefer identity-first language, it is honoring their feelings to use that.
Ariane’s terminology and the links she cited were not wrong; they’re in line with what a large faction of autistic people prefer.
I appreciate that, but the majority of autistic adults seem to prefer to be called autistic. There are a lot of great blog posts by autistic adults as to why they choose identity first language. It’s NOT an insult by any means.
oh God..so tired of all the infighting in the Epilepsy and Autism communities…get your shit together people, the only way to affect change is to support one another. This stuff breaks my heart.
sorry for cursing
I understand that Lisa, but where is the point of compromise with the people telling you your child is a tragedy?
Most people with Autism choose to be called Autistic and hate statements such as “suffers with Autism” we really need to pay more attention to Autistic people.
Couldn’t agree more! “Suffers from” makes me cringe.
I will tell you that my son suffers. There’s no tip-toeing around it. The sensory issues that come with his autism cause him to suffer – literally. The physical pain that he experiences that is common with children who have autism cause him to suffer – literally. The fact that he has to spend his free time at OT, Speech, and PT while other kids are out playing, sucks. This is not saying that he is any less of a person. I’m just stating the cold hard facts – autism is no walk in the park and shouldn’t be candy-coated. Perhaps not everyone with autism has physical or sensory ailments, but a lot do, and they are suffering.
You know what? I have all the things you’ve mentioned your son has going on. And it may be unpleasant for me, but I do not suffer and I am autistic. To separate the autism from myself or imply that it makes me less of a person (as implied in “recognize as a person before we recognize the autism” as if autism makes one less of a person) is something I don’t enjoy.
Purplewolve….I hope tis Mom really hears you. Allow your kiddo, to be a kiddo….just like any other kiddos. They don’t have to be therpied into oblivion…you’d be amazed at how happy your kiddo can be just being a kid, sometimes. MOST with ASD have sensory issues to some degree, but find out what makes your child tick, so to speak. Really get in THEIR world, it is wonderful, I can assure you. Many of us Parentsmake it worse than it really is and a lot of satisfying those sensory issues are easier than you might think. I would get with an Autistic person(s), like Purplewolves and discuss your kiddos issues with them. Bet you’d know in short order what is really bothering your kiddo and tools and strategies for success for all of you. I wish you luck, Tara. It’s not easy, no one is saying it is, but try to be more positive about it, try a different plan. I wish Alex’s Mother had done that instead of killing him. 😦
I did suffer from autism as well when I was younger, and I don’t mind saying it. But I suffered far, far more from the way other people treated me because of it, which was by treating me as just the wrong kind of person, rather than respecting my needs and teaching me to accommodate my sensory issues, which were significant and painful.
And there’s no reason he HAS to spend all of his free time in various therapies rather than playing. That is something that’s being done to him by people who have a choice. Autistic and disabled kids need free time and down time and a chance to play as much as other kids. That is something that YOU can give him.
I stopped listening to peoples perceptions a long time ago, I only have to look in my children’s eyes to see the blessings that they are.
The entire autism/biomedical community rallied to this family’s aid several months ago when Alex was first hospitalized and DENIED APPROPRIATE MEDICAL CARE . . . where was everyone else THEN???? Crickets from the media . . . crickets from the autism nonprofits (Autism Speaks, most notably ABSENT) . . . this family BEGGED FOR HELP and got NOTHING but threats from CPS including forced doping up with pharmaceuticals instead of REAL HELP. Shame on anyone for judging, especially after these poor people LITERALLY BEGGED US ALL FOR HELP.
“Shame on anyone for judging” ?!?! I don’t know about you, but speaking for myself when someone deliberately KILLS someone with a knife, I do tend to feel it’s my right to judge them. I think you’ll find the state will also feel it’s their right to judge them too..before a court of law for the crime of MURDER. Of which they will be found guilty no doubt.
What part of these facts seem to be escaping you?
Amen! Nostromo…these biomedical, Age of Autism people provide nothing but anger and blame for all but the actual guilty party, of the murder. I hope there is a trial, I’d like to see ALL the facts of this case, the actual ones in black and white. You are spreading only part of this story and that is a fact and you know it. I’m happy for the push back, because I am sick of all these blind irrational emotions floating around. She wanted a particular type of help and that is also a fact. Again, there were choices OTHER than murdering him. I can’t imagine what he must have felt as his Mother was stabbing him to death. It is horrific and no amount of “she begged for help” and got nothing nonsense, will erase the ugly truth of the choice made to end his life, a life that deserved living. This is not the media, Autism Speaks fault he is dead, it is the fault of those who killed him, it’s really that simple. I can’t imagine being an Autistic individual, hearing this madness. I am so sorry for all of you that you must endure this craziness. NEVER let it silence you, there are those of us who NEED you desperately. You have been our lifelines, please know that.
So what I’m hearing is that the people who offering her help weren’t offering the kind of treatment (cure) she wanted, so she chose to murder rather than accept her child. This is perhaps the most insidious consequence I’ve seen yet from the propaganda from the age of autism folks, rampant measles outbreaks aside. I wish there was better factual information on this. The biomedical community proclaiming appropriate medical care was denied just isn’t going to cut it no matter how much you capitalize it.
If you go backward and start reading all her posts and unreasonable demands she was making….she had a list where she wanted some Autism Dr. to come in and lead and basically tell all the other Drs. what to do who were actually treating him. Oh she HAD choices, but people are selectively telling this story. It doesn’t take much thought before you discover pieces are missing from her story….that’s what caused me to go backtracking a bit more, it made no sense and then I confirmed why.
And yes, that is what you are hearing…
And I am not against biomedical remedies,for comorbids, provided they are safe. But that IS NOT the only acceptable form of treatment for medical problems and THAT is ALL she wanted, in the face of evidence it may cause more harm than good, in his particular case, when his Drs. were presented with the protocol she wanted them to follow.
Seriously, some folks posting here need to get their heads together and maybe get some help. How can anyone say “don’t judge”? A boy was stabbed to death. Brutally. His last moments were no doubt filled with pain and fear. Forget the mother and think of walking in his shoes. Think of walking in his last minutes of life. This isn’t about who helped or didn’t help or who got sent home. There are always options to brutal murder!
Let’s talk about Alex. He was 14. At some time in his life he must have laughed at something that made him happy. He must have cried. He got angry and lashed out. Yep, I think he communicated his emotions. He was there, a person, no doubt struggling to be understood. He was here, just a boy. Not a cause, not a tragedy. The tragedy is that his life was taken from him by those he should have been able to trust completely.
Arianne, your post was thoughtful. It is sad that Alex’s life was so devalued because he was autistic and nonverbal, and it is tragic that in death he is devalued by those who don’t think we shouldn’t “judge.” By not judging the act of his murder as heinous, we are being asked to judge his life as not being of value.
A child was murdered, people. Take a minute to consider his life and his last moments on this earth.
LOVE, this, thank you…absolutely perfection!
Very well said, D. Very well said.
I have deleted the last comment as shouting, swearing and personally attacking others is unacceptable.
Thank you, that was a really bad one and I am really worried for that person and her child. And thank you for tolerating all of us and I hope I didn’t do anything that would upset or offend you or anyone else.:)
CMK – You and so many others have written so many wonderful comments here. I have loved reading all of them. This thread was a tricky one to moderate. I try to err on the side of giving people the benefit of the doubt and so, some comments got through that in retrospect probably shouldn’t have. I did have to delete one of yours that was responding to the other I deleted as it was now out of context and seemed directed at another commenter, who I knew you were not speaking to.
THAT was beautiful, AmandaQuirky! Thank you for sharing that. Our stories are SO much alike, it’s scary. I knew before he experts, too. I told them and I KNEW nothing positive about ASD. All I knew was I loved her and I would do whatever I had to, to understand her world. And I LOVE the new pic of Alex!!!! Awesome!
Thank you, Ariane, so glad I found your page and YOU found a new pic of Alex, which makes it all the more heinous what happened to him. You’d think he was always in a bed flopping around, screaming. You see him smiling, looking happy. He wanted to be here and this is just so sad, evil and selfish.
I’m glad you found this blog too CMK. Thanks for all your thoughtful comments!
Sometimes it seems we all want to make sense of actions that make no sense. A 14 year old boy is dead. What is that line from Unforgiven…. “when you take away a man’s life you take away all he has and all he will every have”. That his life was taken away by his mother makes it even more tragic. She will have to live the rest of her days with that. I cannot imagine what that must be like to know that you have killed your son. I think the rest of her life will be her punishment.
Ariane…. you always make me think. Sometimes about the things I don’t want to think about. Thank you for that.
Robert – Really appreciate your comment. One thing I cannot stop thinking about is what it must have been like for Alex to hear his mother and godmother discussing how they planned to kill him. Did he hear them? As my friend Barb Rentenbach says (non-speaking, Autistic – who was deemed retarded as a child and author of the book, I might be you) – it is amazing what people will say when they believe they are in the presence of a non-person.
There is zero excuse for murdering a kid.
I don’t care how stressed you are. I don’t care how tired you are. I don’t care how little support you get. I don’t care if you’ve convinced yourself that the kid’s life isn’t worth living. I don’t care if the kid is healthy or if they have disabilities. I. Don’t. Care.
That is no excuse to murder your kid.
What you should do, if you feel like murdering your kid, is go to a hospital. Tell the ER staff that you feel like murdering your kid and that your kid is not safe around you. Tell them that you are an immediate risk to yourself and others, and that if they don’t admit you, you might kill that person.
What you should not do, if you feel like murdering your kid, is murder your kid. That’s inexcusable.
This issue is close to me, as when I was a small child, my father had to wrestle my mother to the ground and call the police to prevent her from doing this to me. I remember her screaming curses and fighting with the paramedics when they came to take her to the hospital, screaming that she wasn’t crazy, that I was evil.
If I wouldn’t cut my mother slack on this issue (and I don’t), I sure as hell won’t cut someone who actually succeeded slack.
Because that attitude? Says that her coming at me with a knife was A-fucking-okay. Because she was stressed. And tired. And unsupported. And sick. No, screw that. What she did was vile. Abusive. Inexcusable.
What Alex’s mother did to him was worse. It was not merely vile. Abusive. Inexusable. It was brutal. Fatal. Murder.
Anonymous, I am so sorry you had to endure that. I agree with you 100%. There is absolutely no excuse or reason to murder your (or anyone else’s) child(ren), whether they are ASD or NT – it does not matter. I don’t buy the excuses of stress, fatigue, sick, and/or no support. I. Don’t. Care. Either!
I do care about Alex. My heart breaks because his mother could actually conceive and succeed in the idea that she should just kill him. We’ll never know if she deprived this world of the next greatest musician or inventor or humanitarian. We do know, however, that she has deprived this world of a soul much better than her’s. She killed a child. Her own child. I just can’t even fathom.
I miss Alex. And I never even knew him.
Anonymous – thank you for writing this and leaving it here. I cannot imagine how painful threads like these must be for you to read. I am very glad you are here and took the time and energy to write this so that others may better understand.
This was a hate crime. Everyone on the spectrum is a human. Everyone on the spectrum have the right to live and evolve. No one on the spectrum is a “hopeless case” and no one is “better off dead”. But some would be better off without certain caregivers.
Thank you! Yes, I get it, living this life is hard. Really hard. But you still are intellectually intact, ergo, you don’t stab people to death. I empathize with the perpetrators, I get it, we don’t have enough community resources. But you don’t do this.
I haven’t been in Alex’s mother’s shoes so I don’t know why she did what she did. I have worked with an autistic young man with no communication in an elementary school. I could see there would be frustration. We don’t know what services that were offered for sure. It is sad that she didn’t get some respite care. I am sure he was very frustrated with not being able to communicate and probably did act out trying to get someone to understand.
May Alex be at peace now. It is a very sad story.
I thank you for this article, and also the debate it has raised. When I read the news, the thought that crept into my mind was, imagine if the headline read, ‘Mother kills son and uses his autism as an excuse’. Would the reaction be any different? Because if you take a week to plan a murder, with a carer, also his godmother I have read, colluding with you in it, that in the end is what happened – she murdered him and excused herself with his autism. Yes, I do empathize also, Lisa, I am sure we all (to a degree) empathize with her struggles but we do not empathize with her choice. Because it was a choice, it was pre-planned! And when the overdose didn’t work, she then chose to stab him. They are not the actions of a deranged, flipped-out, temporary loss of control. My son, at 4 years, stabbed his baby brother in the neck with a plastic fork. He is now a calm, centred student of almost 18. No, he was not severe, so I cannot say I 100% can understand, but he was violent. Now his whole life is ahead of him. Alex’s isn’t. Alex is gone, for ever. We will never know what life he could have had. HE will never know a life in which someone tries to reach in, not reject help because it doesn’t give the answer that doesn’t exist – a cure. My neighbour’s granddaughter is autistic (and prefers to be called autistic!) and talks in seminars. She describes being and communicating with people as rowing a boat in a hard sea out to another island and that, if someone can just make the effort to row to her, it saves her so much strength. Alex needed someone to row to his island. Not blow his island out of the ocean forever. That baby I mentioned is 14 now. He has Asperger’s, ADD dyslexia and depression and I suspect expressive language disorder. He ‘suffers’ from the actions of others. He has talked about dying. He has not accepted his late diagnoses. But the truth is, he doesn’t want to die. He just wants others to understand his ways (such as vocal stims) and how important they are, and allow him possession of those ways without ridicule or forcing them to stop. If Alex could have told someone, I am pretty certain, he would have said the same.
I have to admit something – in writing this I realised I have been guilty of ‘forcing’ my son to stop something he does. He picks up broken bits of, well stuff, at school, like pen parts and wire and plastic. I have spoken to him about how this may create teasing and asked him to try not to do it. I am WRONG in asking him to stop. Why should he? It makes him happy. I will now give him a box to put these treasures in. And woe betide anyone who does tease him. We all learn every day, from our children and each other and we must keep learning. And above all, we must be honest with ourselves.
Metadreamer, I just wanted to say: what a good idea. My little ones like to pick up things (bottle caps, take-away menus, etc) from the sidewalk outside our house. I usually take their offerings inside for them, and I’m quite good at remembering to thank them for giving me whatever it might be, but the idea of giving them a “treasure box” has never even occurred to me. I’m a great believer in letting them be, as they are, without overly influencing them; but sometimes, it takes creativity and going a little further to make the most of something kids are doing. Thank you for that idea 🙂
Meta and Amanda – wonderful comments! Just loved reading these.
AZ, thank *you* for this article. Most of the people posting here have such wonderful things to say, and you’ve given them (us?) a place to do it… hopefully, this sharing and talking to each other is an example of some good, however small, coming out of such a senseless and preventable tragedy. It has certainly made me (even more) thankful for my 2 precious children.
As you know I have an ‘Alex’ although Bella is only 5, never ever could I ever imagine hurting her. Although I am constantly sleep deprieved she is my life and whether progress is made or not I will the same way when she is 50! Love is all encompassing and as a mother whether your child is able or has serious issues a mother will always protect her young. I understand frustration but I try to put it to good use in the right areas, by writing to the government here in England or by writing to the National Autistic Society, get angry and use the energy to get more help for yourself and others who are in the same position. Love to all Sam
((Sam)) Our children can and do flourish with the kind of attention and love you have described. And yes, we parents must use our anger to protest and become “signal boosters” to Autistics both young and old. There will be no change without all of us protesting.
I like the new photo of Alex, thank you for finding it and putting that up Ariane.
Thanks nostromo – I was so glad to find it!
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He mattered, Alex really did matter. Thank you for restoring a beautiful young mans dignity. ~ Wendy Frye
To all the commenters wondering where the autistic community as a whole was- I can tell you at least in my part where I was- I am just one little member but I bet there are more like me. Following Alex’s story a few months ago, I was MAD, LIVID so upset I had to stop following his story. Was I this upset at the hospital? Of course- but I was more upset with the response of the biomed community. There sits Wakefield next to his bed- he was a doctor does he not understand patient rights? Instead of using Alex as a publicity stunt why wasn’t he moved to get his mother to release those restraints, to bathe him, to treat him as a human? See ALL of that was within her power, was within Wakefield’s power within the power of the blog author that first “broke” this story, so why wasn’t it done? I’m not a doctor, but I know in the 8 years of advocating for my son what his rights and my rights are as his mother. The holes in his story at that time were so large you could drive a truck through them. His mother complains about the big pharm meds being dumped into him- guess what don’t sign off on them and they CAN’T give them to Alex.
So you know what I did? Nothing, cause I didn’t want to be vilified when I spoke up and presented the simple, logical, legal solution. I couldn’t handle the shouts of how I didn’t know, I don’t understand, etc. Now let me clarify- I’m not against most Biomed at all. If your kid has food issues, gut issues, get it treated- but I draw the line at feeding your kids bleach, chelation and some others because they are harmful and dangerous. But this was one of those stories that just didn’t feel right, it felt dehumanizing and in my years in the autism community sadly, a lot of these stories tend to come out of the biomed side. The ones that are all about the moms and not about the kids. It was sensationalized it was “look at me, look at this poor mom”. She was likened to Rosa Parks—because she allowed herself and her son to go unbathed for 13 days. That doesn’t make you Rosa Parks–that makes your son a hostage, a hostage to whatever your demands are. Rosa Parks didn’t force her son to sit with her on a bus for 13 days. She didn’t force her children to be degraded for the world to see. I was sickened back then by his mother, I was sickened by her lack of logical advocacy for her son. I was sickened that he became a cause instead of a human.
So where was I? Living my life, trying not to think about the parents in this world who have kids like mine who instead of championing them use them. Those who instead of making a bridge- no matter how many years, tears, pain, etc it takes- between their two islands, stand on the shoreline and stare into the distance mourning the fact their child cannot reach across. Those who refuses to acknowledge the beautiful soul their child has and instead will subscribe to prophets who describe their children as soulless. I’m sorry to Alex I didn’t speak up, I’m sorry I cared more about what faceless people on the internet would say when I spoke out more than I cared that somewhere in the trainwreck unfolding was the one in a million chance someone who had contact with Alex would listen and would do something.
We all failed Alex. And as long as we don’t speak out and say it is NOT right to entertain ideals of killing your child- or kill them for goodness sake as people are trying to do in this case- it is not right to treat them as less than- we will continue to fail more and more of them.
Well said, Anna. I couldn’t agree more, on every single count.
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Our society takes extra time looking at female killers, especially when they kill their own children. Had this been a man who killed Alex he would just be another ‘man’, another monster, typical killer we would have filed away like other male killers. But no, this is a woman and as such we must tear apart her psyche and UNDERSTAND why she, a mother, killed her child. She is a murderer, period. To separate her from males who kill their children is to give her more of an excuse than a proper judgement. To your question, What About Alex? Its unfortunately the same with most victims of a horrible crime like this. It’s all about the killer.
In Alex’s case as well we’ll learn more about her childhood, adulthood, how she felt when she realized her child was Autistic, how she dealt with it and what lead to the murder as a mother. However, if the murderer was the father we’d simply give him the death penalty and move on. No in depth study into his life, no excuses, nothing about how he felt as a father with a disabled child. Because she is a woman society has done into depth reporting of her life, thus giving sympathy to a killer . That in itself is a crime. If it were a man we would not treat the murder the same.
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