The Deadly Side of Autism

I’m sure you all have heard the recent top stories about parents who attempted to, or successfully, kill their autistic child.  The big one this week is about a mom who threw her six-year-old autistic son off of a bridge into the freezing cold water. I’m hearing people respond to such stories with disbelief and disgust, as can only be expected. But I keep hearing one specific question that I might be able to help with…….”How could anyone do that?”

I will tell you how.

Before I begin my depressing discussion of the life that is autism, I want to be very clear that I do not agree with or condone harming any child, autistic or  not. I also have never had a feeling or urge myself to harm my child. EVER! These ladies who have killed, or attempted to kill their child,  will get what they deserve. And I hope it’s not pleasant!

However, if you really look at why things like this happen, you might not be so shocked when you hear these stories.

We’ll start with the woman who attempted to kill herself and her 15-year-old autistic daughter by carbon monoxide poisoning earlier this year. I don’t know all of the details of this case, and I have never met them. However, from what I heard, this teenager was very aggressive and violent. A large percentage of autistic children possess this unfortunate behavior. This aggression can include, but not limited to, hitting, punching, scratching, biting, and kicking either themselves or their parents or both. Imagine that all the while you are getting beaten up by your own flesh and blood, you have to do the basics to take care of the autistic child as well.  This usually includes necessities that ‘normal’ families don’t have to do with teenagers, such as making their food, sometimes feeding them, bathing them, brushing their teeth, dressing them, holding onto their arm while they are crossing a street, helping them with basically all daily living skills, because nobody else is there to do it.

I know most of you are thinking ‘the parent needs to stop allowing the aggressive behavior to happen.’ All I can tell you is to do more research on autism because that is SO much easier said than done. Behavior problems can get better with intensive therapy, but is not always the solution. Which brings me to the other unfortunate dilemma in the autism battle……affording the treatments. Most insurances do not cover autism services (they are working on Ava’s Law here in Georgia).  And, if you make decent money you are not eligible for any services such as Medicaid, waivers, disability, etc. So, most treatments for extreme behaviors are out-of-pocket, and not a possibility for some. And to add to the frustration is the actual services out there. An excellent therapist, wiling and eager to work with an aggressive child, is few and far between.

I was talking to someone recently about the limited services for autistic children with behavior problems and they said, “Why can’t they just go to an inpatient treatment center or group home?” Legitimate question, but these types of facilities pretty much do not exist. There are a few inpatient hospitals that have specialties with autism, but they are VERY limited, and definitely not cheap. (I think the only one in the Atlanta area is about $600.00/day).  There are also group homes, but most are only occupied by adults, and are also a 100% out-of-pocket expense.

Now, still on the topic of aggressive behavior……..I’m not sure if this girl in particular possessed any self-harming behaviors, but hurting themselves is very common with autistic children as well. Imagine watching your child beat their head violently against the floor, causing bumps, bruises, cuts, abrasions, sometimes life threatening injuries. And there’s absolutely nothing you can do about it. I heard a therapist tell an autism parent once that the only thing they can do when this happens is to provide a soft surface to lessen the blow. Also, the other day I saw a picture of an autistic child who would scratch at his nose violently during his outbursts. He barely had half of a nose still left on his little face, and it might be completely gone by now. There really are no “solutions” for many problems in the autism world, even if you can afford it.

OK, so I’m still not done painting the picture that is autism. Now for the everyday battles…………

The look on your childs face when they can’t verbalize what it is they actually want/need can be heart wrenching when occurring on a daily basis, sometimes many times throughout the day……..The fact that approximately 80% of parents with an autistic child get divorced should tell you the amount of stress it causes the family in general…..The fact that some children on the spectrum hate to be touched at all can be heartbreaking, especially for a mother, since it is our ‘job’ to be the nurturer…..The fact that our support system slowly dwindles down for numerous reasons……Knowing that your child will be the target for bullies, and will not have the ‘street smarts’ to defend themselves…..And the biggest one, in my opinion—-worrying every day all day about who is going to take care of our child when we are gone. Parents of ‘normal’ kids only need to worry if their daughter will turn out to be a stripper, or their son end up a drug addict. All we want is for our autistic child to be potty-trained by age 18, or to be able to feed themselves with a spoon, or be able to drive a car. And if they can’t do these things on their own, who will be there to help them?

The list actually goes on and on, but I think you get the idea as to the everyday worries, stressors, and limitations that are involved in a typical autism family. Do these challenges make it OK for a parent to kill their child? Of course not. However, I do think the constant flow of one problem piling onto the next problem (the snowball effect) can really break a person down, and may trigger any instability that may already be present otherwise. I read that the woman who threw her son over the bridge had recently found out that her husband was diagnosed with multiple sclerosis, causing him to be unable to work, and unable to continue providing for the family. I believe they had recently separated as well. Therefore, it is not just the direct stress of autism, but the addition of everyday struggles everyone faces that exacerbates the problem.

There is only so much a human being can take. It is sad that some parents get to the point where they feel that killing their child and/or themselves is the only answer. Everyone you meet is fighting some sort of battle–some more extreme than others. I personally am surprised I don’t hear of these terrible incidents more often, especially in the autism community. This journey is hard, so please remember to take care of yourself.  And for those who aren’t directly affected by autism, but know someone who is, keep an eye out for any odd behavior and ask them if they need anything. And please reach out because I’m almost positive they won’t.  As you can see, they have enough on their plate.

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I Can Hate Today’s Autism Meltdown, And Still Love My Son

Can you still be grateful and have a shitty day? Can you still be lonely and have all of the support system in the world? Can you be a millionaire but still be depressed? Can you take all necessary steps to improve your situation, and yet make little to no progress? Personally, I believe the answer to all of these is “yes”. The world is not black-and-white and neither are human beings (and I don’t mean Caucasian and African-American). There are many shades of gray (and I don’t mean Christian Gray).

I read one of those typical depressing mom blogs the other day (yes, I know my blog fits in the ‘depressing mom blogs’ category LOL), and since it resonated with me I almost shared it, until I read all of the comments. There was not one comment supporting the struggling mother. Every comment was very judgmental, hurtful, and aggressive. All of these “moms” took it upon themselves to tell the writer that she was ‘ungrateful’ and ‘bitter’ because she was complaining about an aspect of motherhood. Just because she was bitching about one negative thing, now she’s a horrible mom????

It reminded me of a similar experience that I had. One of my blog posts triggered another autism mom to bash my honesty, and told me that I was weak, that I didn’t believe in my son, and that his problems were because of me. Now I am all for constructive criticism, but basically calling me a shitty mom is not very supportive. Most moms, including myself, blog as an outlet. There’s not many people who understand exactly how you are feeling. And, it’s usually hard to talk to your husband about mommy problems (no offense, guys), so you got to let it out somewhere.

There’s also the issue of varying personalities. I’m personally not one to smile and say that everything is perfectly fine when it’s not. If a mom wants to bitch about a crappy aspect of her day, please let her do so without judgement. And if ‘pretending that everything is OK when its not’ works for you, then keep doing it, but don’t bash us. Or if someones opinion or advice is what you are looking for, make that known and clear.

If a friend told you she was going to jump off of a bridge because she was so depressed, would you give her the address of the bridge that had the most successful suicides and tell her to do it? I would hope not. Sometimes I feel this way when I am upset about something and venting, and someone tells me everything I am doing wrong and how I need to go about doing it right (and makes me even more angry when I am already doing said suggestion, and they still insist on passive aggressively telling me what to do). Now, I don’t mean when you actually call someone and ask for help or feedback. Then the suggestions are warranted.

Most blogs, and just plain bitching about the day, are just a release to make us feel better. It’s not an opportunity for someone to tell us how shitty we are, and how they have all the answers to make us as perfect as they are. I personally know, as a therapist, that many people need a swift kick in the ass and good direction for positive change, but you pay me for that. Plus, we aren’t even supposed to give ‘advice’ to our patients. Instead, we care for them, therapeutically support them, help them see the best alternatives, and provide resources.

I received a huge compliment yesterday after sharing a depressing blog post (not my personal post, but one I REALLY felt). An old friend told me that my honesty “allows moms the space to keep it real and to be perfectly imperfect”, and that “through honesty there is strength.” I appreciated this more than she will ever know. I, too, appreciate and welcome honesty, no matter how negative. I believe that’s why moms blog—-to “keep it real” and admit that they are “perfectly imperfect.” There’s  no need to reiterate how imperfect we really are. We already know it.

Sometimes all we need is a “I’m thinking about you”, or “I don’t know what you are going through, but I’m here for you,” or just a “you are doing a great job, mom.” Sometimes there is not necessarily a solution, but just an understanding of the situation. Or even if you don’t understand the situation, let them know you don’t understand but you want to.

Just because I always complain about autism and everything negative that it encompasses does not mean that I hate my child. Now, I will admit that I hate autism for the most part, but autism is not what makes my child. I would literally walk through fire and drink molten lava for my son, so hating autism doesn’t equal hating him. Most of my blog posts are negative, but does this mean I hate my life? Some days I probably sound like I do, but talking about it or blogging about it makes me feel better, and usually makes the next day wonderful. Some days are going to be shitty, and I should be able to talk about them without being judged, or told what to do. And, yes, I cry. Sometimes a lot—-but don’t assume that means I’m weak, or that I don’t have it under control beneath those tears.

 

Darwinism or Autism? The Quest for Survival

You know when you have a newborn baby and the only thing that gets you through the sleepless nights is knowing that one day very soon this torture will be nothing but a fleeting memory?

What if someone told you that the torturous sleep deprivation was never going to end. That this is how it was going to be for the rest of your life. Instead of a memory, it will be your daily reality. What if they also told you that you will sometimes be up in the middle of the night catering to him for 3 or 4 hours straight, unable to go back to sleep for fear of his safety.

What if that person also told you that your baby was going to grow up physically, but that was it. He was not going to grow cognitively or developmentally. You will have to take care of every little detail for that child like he is four weeks old, even when he is four years old, or even 40 years old.  And that even when your baby turns 18 and all the other 18 year olds are leaving for college, your baby will never leave the house, unless he is going to a residential facility or a personal care home.

If you had an option, would you still have that baby?

The description is a little dramatic, I know. But, it is my reality.

I recently read an article about a Princeton professor who suggested that severely disabled infants be killed in order to cut health care costs, and also for “moral reasons”. He feels that the “right to life” is based on that persons “capacity for intelligence and to hold life preferences.” He goes on to say that he doesn’t want his “health insurance premiums to be higher so that infants who experience zero quality of life can have expensive treatments.”

I think the initial thought process towards this professor, for most people who have a beating heart, is ‘blasphemy’. It was my first thought, anyway. I have a special needs child who falls into this category of “low capacity for intelligence” and “zero quality of life”. The thought of killing him as an infant is not even a thought that has ever crossed my mind.

A few days after I read this article I started contemplating the actual underlying meaning, and his actual thought process. It hit me during a play date. The depression usually hits hard during play dates because that’s when I REALLY see the difference between my son and every other child. Even those that are far younger than him. And, even those who are also autistic. My friends 1-year-old daughter shook her head ‘no’ in response to a question that her mother asked her. Wow! My 4, almost 5-year-old, has never shook his head no.

Another ‘slap in the face–your son is way too low functioning’ moment came this morning. My husband and I went on a tour of an autism school that sounded perfect for our son. After talking a little bit about our son and his abilities (or lack thereof), the director pretty much told us in so many words that our son was probably not appropriate for the school, based on his limited functioning and abilities. OK, so if he can’t even go to an autism school, what are his other options? If you won’t even take our $30,000, who will?

So this got me thinking about Charles Darwin, and his idea of “survival of the fittest”. It also got me thinking about this professor who feels we should just eliminate these ‘problem’ children from the beginning. All of a sudden, I actually understood where he was coming from.

As I couldn’t imagine my  life without my precious baby, I also can’t imagine how his life is going to be when he is at the age where he is required to take care of himself. My husband and I have sleepless nights (besides the fact that our son keeps us awake) worrying about his future. I know it’s not good to live in the future, but us special needs parents don’t have a choice. Not only are our days filled with worrying about the present, and sometimes just getting through the day is difficult enough, but we have to constantly think about what parameters have to be put into place to help him navigate his world in the future, or heaven forbid, live without us. And because our son has had little to no improvement, along with significant regression, over the past 2 years, we definitely have to consider this.

I think when people initially hear what this professor says, we think he is being selfish and shallow, only focusing on the strong and able. If I may play devils advocate, is it selfish to keep a baby based on our religious values or desires to have a baby, regardless of how difficult that child’s life will be? To not only torture the child through these impossible obstacles, but also torture the parents watching it? My son cries everyday, sometimes numerous times a day, and because of his limited communication, I usually cannot ease his pain. This is very difficult when it is someone you love more than anyone else in the world. I think that’s sort of what this professor is saying. The burden on the parents, children, hospitals and financial/insurance companies combined doesn’t have to be an issue if “it” (as he calls the child in question) is just eliminated from the beginning. However, very few people could fathom killing their precious gift from God, including myself.

The reason I blog about the depressing things in my autism life is not for others to feel sorry for me (but if you want to, you are more than welcome), but more for empathy. Everyone wants others to put themselves in their shoes at times so they understand their struggle, and where they are coming from. And like I always say, now you know why I’m such a bitch and never want to talk to you. (Just kidding…..sort of). I also disclose my innermost feelings to help with autism awareness. People know it must be hard, but they don’t really know why and how it’s hard. They think, ‘oh it’s got to be hard that he doesn’t talk, and can’t play with others, and has meltdowns,’ but there is so much more than that.

I get a little frustrated when some autism advocates say how important it is to appreciate who your child is first, instead of pushing therapies and worrying what society may think about them. As much as I 100% agree, I also have my child in therapy 8 hours a day so that he can learn to drink out of a cup, be potty trained at some point in the near future, draw a straight line, know how to take turns, be able to sit at a table for more than 2 seconds, know the difference between yes and no and how to shake your head accordingly, know how to open a door and open a bag of chips, etc, etc. This is not just about having him look normal to society, but more about him being able to hopefully live independently when he is older. And, to hope that when these professors pushing to kill newborns become more frequent, our weakest links (AKA, the loves of our lives) won’t be eliminated.