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.

To The Manager At The Theatre………from a fellow autism parent

I know I haven’t written a blog for a while, but I honestly haven’t felt moved by anything autism related…………until today.

My life has been quite the typical humdrum autism parent life lately, you know, being the chauffeur, cook, alarm clock, maid, and mind-reader that requires about 90% of my time. The other 9% goes to my sleep, and I guess the 1% goes to my “me” time, whatever the hell that is.

So my hubby had to work this whole weekend, which usually means park time, or just playing outside with Keegan. Unfortunately it won’t stop raining, so the fun had to stay indoors. After being stuck in the house all day and night Saturday, I decided to join my friends and their 2 kids (one with autism and one neurotypical) at the movie theatre Sunday afternoon. Now, we have gone to the movies a handful of times since Keegan was born, and was only slightly successful at the sensory-friendly one. All others were an epic fail. I wasn’t sure if I was up for the challenge, but I was fully equipped with a purse full of goodies. You know the goody bag—skittles, oreos, goldfish, etc. And to make it even better, my friends already ordered our popcorn and french fries, which arrived right after we sat down.

I thought we had it covered……until we didn’t.

We were seeing a special screening of Fantasia, the old Disney movie, celebrating it’s 75th Anniversary. I didn’t realize that the first 10-15 minutes of the screening was going to be a ‘behind-the-scenes’ look at the Philadelphia Orchestra’s rehearsals, along with a discussion by the conductor. I also forgot that typical screenings are very loud to the autistic ear.

So, as Keegan sat there with his hands over his ears and his eyes wide-open trying to figure it all out, I was trying to shove popcorn and fries in his face to distract him, knowing he was starting to “get there”, if you know what I mean. I even broke out the skittles and the stim toy, but they were also a no-go. We were already getting the ‘stares’ because of his vocal stimming sounds, and as I looked around, I noticed there were very few kids in the theatre. The youngest ones were teenagers, so I figured the adults just wanted to go to re-live memories of when they saw it as a kid, and bring their older kids with them.

After a few minutes of squirming and trying to get out of his seat, and me blocking him, Keegan looks right at me and says “go outside!” Coming from a child of VERY few words, both literally and figuratively, this translates to “let’s get the f*#& out of here now, mom!”

I grabbed my purse and goodies so quick, scooped up Keegan, and stomped past approximately 12 people in the isle on my way out, saying “Sorry, don’t worry, we are NOT coming back…….Sorry, don’t worry, we are NOT coming back,” over and over again.

Once we got out and into the lobby, I put Keegan in a chair and sat down beside him. I thought maybe if he chilled out, we could go back and sit in chairs closer to the exit door for an easier escape. Now, if only I could talk him into staying quiet and in his seat. This task is obviously close to impossible for an autistic child with very little verbal speech and even less receptive language. My motivation was to get back in there and finish those yummy fries (and they were still warm 😦 ).

As I got up to attempt another try, I realized that I left the tickets on the table next to the popcorn. Luckily the lady at the counter remembered me and told me it was fine to go back in. I then asked her if I could sit somewhere else closer to the exit, since the theatre was assigned seats only, and she told me to check with the front desk because she didn’t know. As we were talking, a gentleman that obviously worked there, and who must have sensed that “look” on my face, came up and asked what was wrong. I explained the situation and told him that my son was autistic, and that we were going to go back and try again in a different seat, if that was OK.

This nice man kindly said, “Here, follow me and we can get you guys a good seat.” As we approached the door to that particular theatre, Keegan’s anxiety became more apparent, and he began whining again. It was quite obvious at that moment that he did NOT want to go anywhere near that place again, so I said “You know what, it looks like it’s not going to work, but thanks anyway.” The man then looked at me and said, “I have a 25-year-old daughter who is also autistic, so I understand.”

I knew at that moment that he DID in fact understand, and that meant the world to me. I always hear people say, “Oh my neighbor is autistic, so I understand”, or “my cousins’ nephew has autism, so I get it.” But trust me, you don’t, and I completely respect that you don’t. But this was a parent who had been doing this for 25 years, and he DID get it. He was even doing it before autism was the cool thing to do (LOL), and when there was even LESS services than there are now. In fact, he probably “got it” more than I did.

This man then completely amazed me and said, “wait here, I’ll go get you some free passes.” As I’m standing in the dark hallway waiting for him to return, I am hoping that the staff walking up and down can’t see the gleam of tears in my eyes. When he returns, he hands me a pile of free passes, along with his business card. On the back of his card he had written his cell phone number. He then said, “Please call me if you need anything, passes, resources, advice………whatever you need.”

I was at a loss for words, and just told him thanks, and that the kind gesture meant more to me than he will ever know. I then carried Keegan to the car, strapped him in, got into the front seat, and cried for a good 10 minutes. Thank God it was raining so nobody could walk by and see me.

I don’t really know exactly why I cried, because it wasn’t ‘that time of the month’ for me, or anything. I think it was a mixture of the extreme emotions of disappointment and gratitude at the same time, of frustration and empathy at the same time, and of being unable to change the situation and accepting that I can’t change it at the same time. It can get very frustrating to see how easy things are for others when it is such a hard struggle for those with autism and their parents. And, it’s hard when you get another slap in the face that an attempted outing was once again a failure. But then again, it is so rewarding when you meet someone with a compassion that is so familiar, and an understanding that you can only feel with very few people………and free movie tickets to boot!

So, to Mr. Subko, thank you for making a hard time a little less hard. Thank you for telling me that it does get easier. Thank you for saying ‘hi’ to Keegan, and telling me that your daughter also responded with echolalia after Keegan said ‘hi,hi,hi,hi’ back to you (and thank you for knowing what echolalia even is). But most of all, thank you for actually understanding when you said, “I understand.”

The Lone Surviving Autism Mom

Sitting in my living room, I can hear Keegan screaming and crying downstairs. I can’t do anything about it because he is with his ABA therapist, and I know what they are doing. I know she is making him sit at a table for a certain period of time, when all he wants to do is stand up and stim, jump up and down, or dive into his swing. I know she is holding his little legs down in the chair so he can’t get up. I know they are not physically hurting him, but I still cry. I cry because of everything we put that poor child through on a daily basis to hopefully make him “better”. And he’s not getting better.

I think that the tears and the ‘woe is me’ attitude is in full effect today because of a dream I had last night. You know how sometimes a good or bad dream can influence your mood all day long. I dreamt, for a very short dream, that I woke up and everything around me was in shambles. Just like in the movies when everybody is dead and there are only torn down buildings and dirt, and the lone survivor is walking around wondering where everybody is, and why everyone is dead. I quickly woke up with my heart beating fast, wondering why the hell I was dreaming THAT, and why I was the one who had to be the lone survivor. Then, as I was getting Keegan’s breakfast ready, I realized maybe I had that dream because deep down that is exactly how I feel. Just like a lone survivor……….Alone. Sad. Frustrated. Confused. Chaotic. Beaten. Nobody there to talk to, or to understand me. Nobody who relates to me.

This is the life of autism.

After dropping Keegan off at school earlier this morning, and not getting a “good-bye, mommy” as usual, I decided to go to a nearby consignment sale for kids. As I was rummaging through clothes, I heard a familiar voice nearby. It was an old friend who I had lost touch with over the last 4 years. She had a son who was born the exact same week as Keegan, so we bonded during our pregnancies. We promised to keep in touch after the boys were born and after they moved, but you know how that goes. I was getting ready to walk over to her and say “hi”, and to rekindle the friendship, but I stopped. I decided not to say anything because I didn’t want to hear how great her son was doing, and how wonderful her life was. But more than that, I didn’t want her to feel sorry for me when I told her how poorly Keegan was doing and how much we struggle on a daily basis. I’m not one who can lie and say “I’m fine”, when everything is not fine.

As I am trying to avoid running into her, I start to wonder why this part is so hard. What would be so bad if we talked, and then hung out with the kids sometime? Well, simply because kids don’t want to hang out with Keegan, and I don’t blame them. And, most adults don’t want to hear me whining, and I don’t blame them either. It’s not that Keegan is annoying or mean, he just doesn’t like to play with anyone. He is literally in his own world all the time, and doesn’t allow anyone in most of the time. So, this is why I chose not to say hi.

I was recently at a play date (if that’s what you want to call it since Keegan doesn’t reciprocate the play), and I overheard the child tell their mom that they didn’t want Keegan to come over anymore. Thankfully he wouldn’t even understand if it was told to him, or if he heard, but it hurt.  Now, I don’t want that person to feel bad if they are reading this, because trust me when I tell you—I get it, more than you know. But even though I understand, it still hurts. It hurts that most people are not willing and/or able to see the purely sweet heart and soul that Keegan possesses. However, if I was a little kid, I wouldn’t want to hang out with Keegan either.

My husband has been battling with the ‘losing friends because of autism’ thing. He doesn’t understand why others do not reach out, especially ones who were close. I, on the other hand, understand why some friendships end after the autism diagnosis. I believe people struggle with what they are supposed to/not supposed to say and do. They have no idea what that family is going through, they can’t relate, and they don’t want to say the wrong thing (my opinion, anyway). And, I know we could do some of the reaching out, but it’s hard when everything in your life feels negative, and you don’t have anything to contribute to that relationship because all of your energy is given to this one little human being.

As I am feeling sorry for myself, listening to Keegan cry with his ABA therapist, I realized that maybe I had the crazy dream last night because of something I thought about before falling asleep last night. I was in bed thinking about the fact that I had not prayed in a very long time. I used to pray for others who were struggling, and rarely what I wanted or thought I needed.  I would always tell God (or whatever higher power is up there) thanks for everything he has given to me, and allowed to happen to me, to make me who I was. I felt very blessed, and tried so hard not to take things for granted. When Keegan’s struggle began, I think I prayed every night. I prayed he would sleep more than 6 hours, I prayed he would start talking, I prayed he would look at me when I called his name, and I prayed that I would be the best mom I could be while he struggled so much. The list of prayers went on and on.

When nothing was improving, and none of my prayers were answered, I stopped praying. I stopped relying on the higher power to help me through, and realized I was in this alone. However, on the flip side, I also feel that God has made me a person who can deal with this lonely and frustrating battle. I realize that maybe this is my “calling”, and my fate. Maybe I’m supposed to be that ‘lone survivor’ who somehow saves the day, even though she has to do it all by herself.  And as much as I struggle with it, I am OK with it, and I accept it. I have to. I just wish some days were easier and not quite as lonely and frustrating, for me AND Keegan.