Should I stop calling autism a disability?

In recently months I have received three messages from people with autism asking me to stop calling autism a disability or a handicap. I’ve also been told by more than a couple parents that they would not change their child and take their autism from them if they were given the opportunity. I cannot even wrap my mind around it. My son, Tate, is 12 but functions at an intellect of about age 7.

When Tate was diagnosed I never would have dreamed there were people out there who would not mourn their child’s future the way I did when my son was diagnosed. I accept that my son has autism but I cannot rejoice in it. Autism has created obstacles and barriers that we are constantly trying to break down or find our way around. My son suffers because of his autism. He cannot communicate with us well and is often frustrated because we do not understand what he is trying to say to us.

We have done a lot of therapy to help our son and have seen great improvement in his level of functioning. I’ve since seen a tee shirt mocking the therapy we did. The quote was, “I survived ABA therapy.” My son survived it as well and without it he would have been lower functioning than he is now. 

The premise of some is that autism is not a disability but just another culture or race of people. I don’t buy into it at all. I see what the doctors at Children’s Mercy see: a neurological disorder, a disability.  

I admire Temple Grandin. A. Lot. I mean- I’m a huge fan. She says she would not flip a switch and change herself is if she could. I do not doubt her. I’m even happy for her. However, I still see autism as a disability. She had to overcome a lot of things. MOST of the people that I know in the autism community would flip that switch in a heartbeat. MOST of the people that I know with autism are not going to function at the level that Temple Grandin does.

I wonder if the people who ask me to stop calling autism a disability have ever put themselves in the shoes of someone with severe autism, or in the shoes of their caregivers. Possibly they cannot. Possibly they cannot because their empathy skills are limited or their theory of mind is almost nonexistent. Kids with autism often have self-injurious behaviors. Many are nonverbal, and do not understand their surroundings. Many are a danger to themselves. Many have to wear diapers. Many never learn to read or count. How can that NOT be a disability? The definition of a handicap is “a condition that markedly restricts a person's ability to function physically, mentally, or socially.” Sounds like autism to me.

Seen the news lately? There have been several children with autism who have wandered away and been found in bodies of water. Their mothers probably would have “flipped that switch” and eliminated their children’s autism if there had been one.

Tate, age 12

I’m not unhappy. I'm not bitter because my son was born with autism. When I'm counting my blessings though, I do not count autism. I do count Tate! We make the best of things; and we are enjoying a nice life. My son is considered high functioning. However, he DOES have a disability. While this family counts our blessings and understands we are one of the lucky ones, we still know that Tate is very limited in his abilities and his future will include a caregiver. I call that “being handicapped” and I do not believe it is anything to be ashamed of or embarrassed about. It is what it is. 

I wrote a similar post "Celebrate Autism?" in 2013.

Also by this author: "15 Truths of Parenting Special Needs Kids."

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Man Sized Jumps

There are so many developmental milestones that Tate did not reach on time. Many of them I noticed, but some I never even missed. Being an experienced mother I am sometimes shocked at some of the ones I let slide by without wondering about. Once in a while Tate will do something that he has never done before and I’ll think, “WOW! This is huge (several years late, but so cool)!” About a month ago, Tate started jumping from the second step on the staircase, skipping the bottom step. My other kids did this long before kindergarten. Tate is twelve years old and six feet, two inches tall. This is one of those activities that I waited for but it just never developed. Levi is only three years older than Tate, and Sydney is two years younger, so they were often jumping off of steps, small retaining walls, the porch, and many other things. I tried to teach Tate to jump many times but he just could not do it. He could “sort of” jump if he was on a flat surface, no drop involved, but even then one of his feet always followed the other so that it was a hop or a skip and not really a jump.

My other kids would holler, “look at me!” or “watch me mommy!” as they jumped off of things or ran through the house and jumped over things. There’s that joint attention that I often talk about, once again. Tate never wanted my attention in the way a typically developing child would, so he never asked me to watch him do anything. But truthfully, there was not a lot of excitement going on in his world to watch. Don’t misunderstand. I am head over heels in love with my guy Tate and he did not have to “do” anything to impress me. I spent more time with him than any of the other children, teaching him things, helping him with things, trying to pull him out of his private world constantly. He mostly wanted to sit and stim or stare at something. And now, I’m off topic again…  This post is about why Tate did not jump, not about why he did not ask me to watch him jump.  (See: Look What I Can Do!)

I believe that Tate has found it so hard to jump for the same reason he struggles with many things. It is called spatial awareness. Have you ever had your arms really full and tried to walk down steps without being able to hang on to a rail or to see exactly where your feet are? It can be a little uncomfortable. Have you ever missed the bottom step because you miscounted? Maybe you thought there was one more step but you were at the bottom already? Or you thought you were at the bottom but there was one more step there? That awful feeling you get when you cannot tell exactly where your foot is or if you are going to fall or not is probably an approximation of what Tate felt for years just walking up and down the stairs. It took him a very long time to be able to walk up or down stairs without a tight grip on a railing. He would walk up one step at a time, bringing both feet on to the step but never alternating feet and climbing stairs quickly as his peers did. Finally, long after he should have, he mastered the stairs. 

Tate does not balance well. Like many people with autism, Tate needs both feet firmly on the ground in order to feel safe. He has a really hard time feeling comfortable if he is leaning back or standing on one foot. Remember my last post about his first trip to the dentist? Lying back in the chair that moved was so frightening to him. We had to practice at home. Here's the link to that post.

Why has Tate suddenly started jumping? It probably has a lot to do with the development of some of that spatial awareness lately. Remember the bike camp I have talked about? He learned to ride a bike this summer! (See the link here.) I think the bike riding may have taught him a lot about spatial awareness. He can balance on the bike and has gotten so much more confident surefooted across the board. After Tate started jumping off the stairs it wasn’t long until he was jumping into the pool. I had all but given up on that ever happening! Big things are happening at our house. They may be baby steps at your house but they are man-sized jumps in ours, literally.

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Cleaning, Filling, and Straightening the Teeth of Autism

Going to the dentist can be very stressful for people with autism. The noises and smells, the poking and prodding, the bright lights that shine in your face, while you are tipped back in a chair that changes heights, can all be over stimulating for sure. We went this week and Tate got his teeth cleaned. He is finally tolerating it all very well and I can give most of the credit to the magnificent dental hygienist who cleans his teeth and a team of dentists who are so patient and kind.

Tate’s siblings went for a “happy visit” to our dentist when they were about five and the dentist just sat them in the chair and counted their teeth. After that, we would start going regularly for cleanings. Tate’s first visit did not go well. He was uneasy in the chair and panicked when it laid back. He would not hold his mouth open and gagged anytime the dentist tried to put anything in his mouth. I was not surprised. I wondered if he’d ever be able to see a dentist and what we would do in the event of a cavity. For that matter, how would I know if there was a cavity? Tate did not tell me when he was hurting. He did not have the ability to communicate to me when he hurt. He often had terrible ear infections as a toddler but I never knew until there was a fever. It was always a guessing game for me. Sometimes I took him to the doctor suspecting an ear infection, and there was nothing wrong and sometimes the doctor would say, “OUCH, he must be in so much pain!” And, Tate never said a word or indicated to me that he was in pain. But I was talking about teeth…

I was able to brush Tate’s teeth at home but usually had to get him in a headlock to do a very good job. I did not accomplish the headlock and the good job every day. If I handed Tate the toothbrush he would rub it on a couple of front teeth, spit, toss the toothbrush toward the sink, and call it done. He actually does not do much better than that now, at age 12. I cannot still get him in a headlock and I have to stand on a stepstool if I am going to help him these days. He is so tall!

That first time in the dentist chair at age five, was a disaster, but all was not lost because of an amazing dentist with some great ideas. The dentist sent us home with a little mirror on a stick and told me to “play” dentist with Tate. He told me to get a sturdy chair and practice reclining him in it and putting the mirror in his mouth until he could tolerate it without gagging. I did that several times over the next few months and Tate became tolerant of it. The next trip we made to the dentist went very well.

HOWEVER, the first time Tate had a cavity we were back to square one. I believe he was seven years old. The visit to try and fill the cavity was disastrous. So, we rescheduled and arranged for an anesthesiologist to put Tate under so the dentist could fill two cavities and get x-rays. It was expensive but it did not look like there would be any other way.

Getting that filling was quite an experience. He had no idea what was going to happen and not enough receptive language for me to really explain it to him. When we got to the dental office I told Tate he would be taking a nap in the dental chair and I pulled out a new DVD and his little DVD player. Tate was elated. He climbed right up into the chair and started his movie. They gave him a shot almost right away. It must have hurt ‘cause he hollered, but he did relax right away. He did not even flinch for the IV. They wrapped him tightly in a blanket and taped his eyes shut and then it was time for me to leave. I hated walking out of that room. I was banking on him not remembering anything but later that day he told me several times that he had bad dreams while he took his nap at the dentist and “they moved his teeth all around.” It probably felt like they had. They filled two cavities, removed two baby teeth, put sealants on his molars, took xrays, and plaster impressions for an orthodontist. They did it all in 90 minutes. Coming out of the anesthetic was rough. He kept bursting into tears and saying, “I’m so sad.” He insisted I kiss him so I kissed his cheek. He said, “No! Kiss my mouth.” His breath about knocked me down but duty called. HA

The plaster impressions they took that day were sent to an orthodontist. Tate’s teeth were actually so crowded that some were coming in behind others, but I thought any notion of Tate being able to handle braces in his mouth was absolutely ridiculous. I did go to a consultation with an orthodontist who assured me that he could put braces in Tate's mouth, move his teeth, and do it without overwhelming Tate (or his mother). We found that the orthodontist was just as incredible as our dentist. Tate was amazing. He did very little complaining and handled much more than I ever dreamed he would be able to. We went slow and did a minimal amount of work on the teeth but it made all the difference. The braces were worn for about a year, while Tate was in second and third grade. His under-bite was fixed and his teeth do not overlap like they once did. We found that wearing a retainer is out of the question though. Tate can’t even hold it in his mouth without choking and gagging. We hope to go back in the future for more work on straightening everything up further. 

2010               and                2011

Tate had a cavity filled in the dental office without anesthesia a couple of years after that first cavity was filled. He did quite well and I thought we would be fine from there on out. However, we tried to get a cavity filled in the Spring of this year and the drilling was just too much for him. Tate tried so hard to cooperate but he could not. He kept closing his mouth and putting his tongue in the way. He asked for a drink over and over and gagged a lot. The dentist tried everything he could but it was not going to happen that day. So, we rescheduled and called in the good old anesthesiologist again. The experience was very similar to the first time except he only had to be under for about 20 minutes. This time, upon awakening he did not cry. He just said, “I love you, Mom” about fifty times which has become something he does when he is stressed lately. I don't hear it often enough and I do love hearing it but wish it was not usually under duress. 

The other day when we went for the cleaning? They suggested we begin using a Sonic toothbrush. I haven't worked up the nerve yet to suggest we push something noisy and wiggly in Tate's mouth. School starting back up was stress enough for one week. I guess I had better practice my ninja moves and my headlock holds and break out the electric toothbrush soon though.

I recently blogged about our last trip to see a medical doctor. You can read that here: Immunizations 

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It's Too Loud In Here!

Many people with autism like to be alone. They like quiet. They like calm. They might like some noise but only controlled noise. So, they don’t necessarily want silence and I’m not sure it is even about volume so much. They just don’t want unpredictable noise or chaos. For example, Tate loves music, television, and movies. He even likes surround sound but he NEEDS to be in control of the noise. He needs to be able to walk away if he is feeling overwhelmed. He wants to pick the movie and control the remote. He can feel at ease if he is controlling his environment and is able to predict what is going to happen. Touch, smell, taste, and sight are all a big deal to a kid with autism and I recently addressed some of Tate’s issues with touch. Noises (sound) are also an issue with many kids with autism.

Tonight we went to a restaurant. Ten feet from where Tate was sitting was a crying baby. Now, Tate doesn’t hate babies but Tate was miserable. He squirmed. He complained. He whispered things about babies who cry (whispering to himself is one of his stims). He stuck his fingers deep into his ears. He asked me if I had any headphones. (They use headphones at school to help with the noise level sometimes.) The screaming went on for about ten minutes while the mother ignored her baby. I love babies; but I honestly was beginning to squirm a little myself. Finally, the mother picked the baby up and gave him a bottle. The little guy went right to sleep and we were able to enjoy our meal. I have a friend who has a son with autism who probably couldn’t have lasted the ten minutes. They would have had to leave after just the first cries. Interestingly enough though, I have another friend who has a son with autism and when he goes to a restaurant he, himself, makes a lot of noise. He is non-verbal and one of his stims is to make loud noises. (Remember, autism is a spectrum and people are all over that spectrum.) The same young man who likes to make loud noises? When his baby brother cries he puts his hands over his ears! My theory on this is that he does not like his baby brother’s noises because they are totally out of his control and unpredictable. He needs to be in control of the noise to be able to tolerate it.

Just hangin' out, upside down.

Recently, Tate’s sister and I were in the living room watching a movie that Tate loves. I told him I wanted him to watch it with us. He watched it but he could not relax and really enjoy it. He sat in a hard backed chair behind the couch, instead of on the couch with us, and watched from the dinning room. He could not relax because he was not in control. He was not alone to enjoy the movie and he was not going to be able to pause it if he wanted to, or run it back and watch his favorite parts more than once, or fast forward through the song he did not like. He would have enjoyed the movie so much more if he’d been alone to watch it. When given the choice he will almost always choose to be alone.

Having seven children and belonging to a small, close-knit church family, we have always had a lot of “people traffic” coming through the house. It sometimes gets pretty loud in our home. When he was little, Tate did not hang out in the living area, showing off, and trying to get the attention of the adults as my older children had. He did not run off to play with the other children. He usually snuck off to my room, climbed into my bed to watch television, and wait for everyone to leave. I’d find him and invite him to be a part of our gathering, but know that he would not be coming out until the noise level was back down to his liking.

Tonight when the baby was crying, I was not only feeling a little stressed from hearing it myself, but I was watching Tate squirm and I was feeling stressed because he was stressed. I try hard to make his world “autism friendly” while at the same time challenging him to step out of his comfort zone and make his world a little bit bigger. It’s a fine line. I am usually guilty of staying far inside his boundaries to keep him happy but once in a while I drag him too far across the line and feel terrible about it. Sometimes it does pay off though. Sometimes, instead of a meltdown and huge amounts of anxiety, that lead to nothing but more anxiety, we get growth.

Going through a carwash was out of the question a few years ago. The noise terrified Tate. Now they are very doable. Tate still becomes a little nervous, probably because of the noise, but he loves watching the soapsuds cascade down the windshield. Smoke detectors at home and fire drills at school are no longer things that send him into a panic. Fireworks are another example of progress made. When Tate was young, a fireworks show would drive him over the edge. On the fourth of July, his siblings would have a great time with their dad out in the yard lighting fireworks. Tate would be inside in my bed hiding under blankets while I tried to soothe him. We did not stop celebrating the fourth or make our older kids go somewhere else to light their fireworks. Although we are very considerate of Tate’s disability and his sensory issues, it cannot ALWAYS be about Tate. We do have six other kids who need parents too. Surprise! Somewhere around age six or seven, Tate decided fireworks were pretty cool. Now he looks very forward each year to those loud pops and booms. He still watches and listens with his fingers in his ears but he enjoys the lights and noise quite a bit. He’s really livin’ on the edge now, huh?

Note: Most children with autism have Sensory Processing Disorder (SPD) and I will be writing more about Tate’s sensory issues in the near future. I recently wrote a blog post entitled “Don’t Touch My Skin” about his aversion to touch that you might find interesting.

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