Tag Archives: Autism therapy

Autism therapy: all children are unique, even those with Autism

Autism Therapy- all children are unique, even those who have AutismOy, therapy for children with developmental disabilities. We could get into quite a discussion couldn’t we? How well it’s done or not done, how it should be done, what age to start therapy, how often and for how long. Lots of shoulds and should nots aren’t there?

When you begin on the road of Autism you hear everyone’s opinion; your mothers, friends, co-workers, therapists, teachers, spouses, and the stranger at the grocery store. And gee, could it be that you even have your own opinions? Today I’d like to share my reaction to some therapist’s view point, and hope to help you if you’ve run into this situation.

When we started therapy for Jeremiah we didn’t know Jeremiah had Autism, we only knew he was developmentally delayed and wasn’t speaking. Two therapists worked with us in the beginning, a speech pathologist and a developmental interventionist. As they worked with us, I asked them about Autism. Their answer:

they use the same therapy with every child, no matter what disability or disorder they might have.

What?? How is that possible? I asked it three years ago, and I still ask it today. How can you treat every child the same? How can you treat a child with a speech delay the same as you treat a child with Angelmans Syndrome? You don’t. If you did, you wouldn’t get anywhere with one of them, and a whole discombobulated mess would ensue.

When we think of Autism, we think of fairly specific behaviors. And, when we add in each child’s specific developmental position, they’re each unique in how they learn and take in information. Sure, you may have a group of Autistic people who learn best through visual stimulation, and you might have another group who learns best through tactile stimulation, but

each individual needs to be taken into account and not grouped together.

So, this idea of doing therapy the same for every child struck me wrong from the beginning, even when Jeremiah didn’t have the diagnosis of Autism. Why? Because my son was not every other child. How did I know? Because I’d tried this theory out on my own before any “professional” came into my home.

Our daughter, Payton, came to us at nine-months through foster care. When she came, I began talking to her in full sentences, and although she struggled with emotional and social development, her intellect was well in tact. She understood me, responded to me, and began talking at an appropriate, if not, young age.

I took this same approach with my son, Jeremiah. My opinion was that children can understand if given the opportunity. Yet, at some point I realized what I was doing wasn’t working. The request, “Get off the table,” didn’t mean anything to Jeremiah, I could tell it wasn’t a disregard for what I was saying, but a lack of comprehending what I wanted from him.

When the therapists came in, they wanted me to change how I talked to him. I needed to simply say, “Get down.” They explained that he heard the last word or two I was saying, so he heard “table,” not “down” if I said, “Get down from the table.” Also, if I was to say, “Please don’t hit,” he would only hear the word, “hit,” and not stop the action.

That right there is a very basic example of why therapy isn’t the same for all children.

Is your child's therapist treating them as a unique individual
Here’s another example. A friend of ours took her daughter, Hannah*, to a speech therapist, she loved it and raved about it, saying that we needed to take Jeremiah. Very sweet. But as she explained what this therapist did with her daughter I quickly realized it wouldn’t work for us.

This therapist would ask Hannah to do something with her mouth, and when she did she would receive a reward. For example, the therapist would ask Hannah to make an “O” with her mouth a few times, and she would be rewarded with something, like playing with a toy for a minute. This is a fantastic way to help a child who can understand directions, or who can copy a persons movements. Jeremiah can’t.

Jeremiah’s understanding is developing continually, but he’s still not at the point where you can ask him to do something that’s outside of his everyday routine, there are a few things he can do, but not much therapy-wise. So, no, not every child is treated in the same way in therapy, nor should they be.

Each child needs to be worked with where they are.

Some therapists understand this and some don’t. The Developmental Interventionist I mentioned above is awesome. When she told me she treats all children the same, I think she was only quoting what her manager was saying. She understood Jeremiah and worked with him with such intuitiveness that we asked her to work with him privately after his Early Intervention ended. She took Autism into consideration. She didn’t push Applied Behavior Analysis (ABA), but conformed it to fit Jeremiah.

It’s so important to be aware of what therapy is being done with your child. There are many Autistic adults who say they were abused through ABA. Some therapies today have modified ABA to make it less intrusive, but some haven’t.

Has a therapist ever said to you that they use the same therapy for every child? Is there a therapy being used with your child that makes you uncomfortable or question whether it’s right or wrong?

You can find out more about Autism therapies in these posts:
More perspectives on Applied Behavior Analysis (ABA)
My Thoughts on Applied Behavior Analysis (ABA)

*Names have been changed to protect privacy.

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“scream rooms” and shock therapy being used on Autistic children: Do you know what your school’s doing?

scream rooms autism
What equates a torture device? Something that makes someone go crazy? I’ve come upon two organizations in the last few months who use torture to get what they want (and really in the end they aren’t getting what they want). You may think this doesn’t happen any more, it’s 2014 for goodness sake. Well, that’s what I say, except, it is real, and although we feel we’re such a progressive society, there still exists this idea that you can somehow work the Autism out of a person.

What if your child was confined in this?
scream room in Deer Valley (Phoenix) schools

I hope if you’re a parent of Autism you continue to read this, so you can be aware and advocate for your child. If you’re not a parent of Autism, I hope you read on because we need you to be another voice for our children, our teens, and adults who aren’t being treated as “typical” human beings.

The photo above was the latest shock, a “scream room” in the Deer Valley public school district in Phoenix, AZ. I was livid when I saw the photo and read the article. A padded, completely closed-off cell in a public school? My blood boiled, feeling angry, scared for the children who must have been frightened out of their minds when placed in an isolated space. I’m claustrophobic, and being in there would drive me absolutely nuts, and it would be a million times worse for an Autistic child. I can’t even wrap my mind around it.

Just for some perspective, we used to put Jeremiah in his room when he was having a really difficult time. He was able to calm down in his space. I hadn’t put him in there in a while, but he was having behaviors I couldn’t handle, so I wanted him to calm and settle in his room.

This time it wasn’t the same. We’ve done it twice and won’t do it again. Why? He was in there less than three minutes and he went out of his mind both times. He screams often, happy screams, screams when he’s mad, but this was a whole new level, he was furious. He screamed up to the moment I opened his door, then he shut himself off from the world, this faraway look in his eyes. Some with special needs may have this look, but Jeremiah doesn’t, so it scared me. I held him, but he climbed out of my arms and just sat there on the couch, staring. Why did I even do it a second time? I’m human. I wish I wasn’t. If being in his room with toys, windows, a comfortable bed affected Jeremiah so negatively when he was in a disregulated state, what would it be like for an Autistic child to be placed in a “scream room”?

In 2012, after this report came out about the “scream room” in Phoenix, Arizona, house bill 2476 was passed, in part it says, “Beginning in school year of 2013-2014, disciplinary policies for the confinement of pupils left alone in an enclosed space. These policies shall include the following:

  1. The appropriate criteria for confinement,
  2. The size of the room in which the confinement will occur,
  3. The maximum number of minutes that the pupil will be physically prevented from exiting the room in which the confinement occurs,
  4. The method in which the pupil will be monitored by an adult who’s in close proximity to the room in which the confinement occurs and who is able to see and hear pupil at all times. (/An adult cannot see into the “scream rooms” in the Deer Valley school district./)
  5. A process for prior written parental consent before confinement is allowed for any pupil in the school district.

I’m not a professional at reading senate bills, but it seems to me that no criteria has been put in place, except that parental consent is required. The bill does not define the amount of time a child can be confined, nor the size of room the child can be restrained in. Autistic children hit themselves, pick at their bodies, pull their hair. This is called self-injurious behavior. This is cause for confinement under the house bill in Arizona.

I found another explanation of the house bill herewhich explains the school has permission to use confinement if the child poses harm to himself or others, even if a parent has NOT given prior consent. The administration then needs to notify the parents the day the confinement takes place.

In my opinion, which I stand strongly on, the use of a secluded room is unacceptable, it’s a cruel punishment that should never be implemented. Never.

In a February 2014 ABC news report by Angela M. Hill and Matthew Mosk, they say, “The Senate findings mirror those in a 2012 ABC News investigation which found that thousands of autistic and disabled schoolchildren had been injured and dozens died after being restrained by poorly trained teachers and school aides who tried to subdue them using at times unduly harsh techniques.”

The report also mentions the case of eight-year-old girl, who has “attention and hyperactivity disorders” from Minnesota who was closed in a room alone forty-four times in one year. This took place in spite of her parents and behavior consultant opposing the strategy.

A dismal eighteen states require parental notification when a child has been restrained in a school setting.

This video was released in 2012 of a teen boy named Andre, being shocked thirty-one times at the Judge Rotenburg Center (JRC) for developmentally disabled students. WARNING: This video is graphic, it may be disturbing to some and is not suitable for all audiences.

Why did the staff use shock therapy on Andre? Because he wouldn’t take his coat off. He had to wear someone else’s clothes that day, and was embarrassed, therefore insisted on wearing his coat, which the staff did not approve of. This “situation” took place in 2002, and went to trial in 2012.

Over at the Autistic Self Advocacy Network, Shain Neumeier says of the JRC trial, “After several more hours of jury deliberations the next day, the parties agreed to settle for an undisclosed amount of money…Ever since their clients signed onto this agreement, the defense attorneys have insisted that JRC and the three individual defendants were not liable, and have defended Andre’s treatment as reasonable. They went so far as to say they were glad that the tape was shown in court, allowing the jury to see that Andre was receiving proper treatment at JRC.”

I’m shocked, literally pained, and appalled by all of this. If this is happening in one school district or “center” it’s taking place in others. These are not isolated instances.
how does your school treat children w special needs

One message we should get from this is strong and clear, we have to constantly be advocates for our children, teens, and adults if they move on to day camps or other living arrangements. Whether it be at school, church, a therapy office, or daycare, we have to be aware of what’s being done to those with Autism. Don’t just call or email your school and ask if they use isolation rooms, scream rooms, or if they seclude children with special needs, take a tour of the school while children are in class. Ask questions. Talk with other parents of special needs children. Emails and phone calls won’t get you answers, you need to be present. Pick your child up sometimes, don’t only rely on the bus system. Talk with teachers, paraprofessionals, and aides. Know what everyone is doing with your child.

In response to these atrocities being used on people with special needs, some say, “But it worked for my child,” “It worked for me,”  or “I work with the special needs population and I’ve seen it make a difference.” I say for everyone it did help, it harmed several more. The question should be asked, “Would you do this with a typical child [or person]?” This question was brought to my attention by Heidi Lostracco on Speak for Yourself. I think the answer in these cases, with both “scream rooms” and shock therapy, would be a resounding, “NO!” And if it’s not okay for a typical child, it’s not okay for a child with special needs of any kind.

Please share this with others so everyone can be aware of what’s happening to children with special needs. They don’t have a voice, but you do.

What do you think of the implementation of “scream rooms”? What would you do if you found one in your child’s school? Would not signing a consent form be enough to ease your mind that your child wouldn’t be placed in one?

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is changing Autism acceptable?

How much can you change Autism, yet keep
Last week in the post, Are Autism Behaviors Annoying, I mentioned a conversation which took place between me and a family member about Autism. You can read that post to see where this relative, Joan, was coming from.

Joan continued from the “…annoying,” comment to telling me about an acquaintance they recently ran into. This acquaintance (someone I also know), Lacy*, has a son, TJ*, who has Autism.

TJ’s mom, Lacy, had chosen to open a store where her son was present during business hours. Lacy cried herself to sleep every night because of the horrible comments the customers made about her son.

She couldn’t handle the criticism.

I understand that it’s so hard to hear comments about your child, or about Autism behaviors in general when your child is on the Spectrum. I haven’t spoken with her about it, so I don’t know if she felt she couldn’t run a business with her son present, or if the comments made her feel bad. Maybe she felt for her son and what he was going through. Whatever her reasons, it’s important that as Autism parents we ask ourselves where our focus lies.

Is our focus in “curing” our child so we can live “normal” lives? Or is our focus to help our child be the happiest they can be? Do we want our child to have different behaviors so we can function in the way we want, or is it because we think it will be best for our child in the end. As I’ve talked to adults on the Spectrum, I’ve learned that so much of what some Autism parents want is not what the Autism person wants.

Forcing them to fit in isn’t necessarily what’s best for them.

I’d already heard about what Lacy had done with her son to help his is our goal in changing Autism to make our life easierAutism, so I said to Joan, “I really don’t want to ‘cure’ Jeremiah’s Autism.” She looked at me as though I was an alien who had fallen from another planet. “Why not??” I answered, “Well, I’ve talked to many adults with Autism, and they like who they are, they don’t want to be changed. And second, I like who Jeremiah is, I feel he’d be very different if his Autism was taken away. His Autism largely makes him who he is.” Joan disagreed and said she thought he’d have the same personality without Autism.

I can see where it would be impossible for someone to see it from my perspective if they aren’t involved in the Autism community, don’t talk to others who are Autistic, and see the positive attributes of Autism. So many want Autism to go away, as I’ll discuss a little later.

Joan explained again what the doctor had done with TJ. He used wires which connected to TJ’s head while TJ held a dog in his lap. A video played on the screen, and anytime his brain made a connection on the “right” pathway, the dog danced in his lap, thus reinforcing that “right” pathway. Here’s my concern I shared with her, “I would have it done on myself before I ever let them do it on Jeremiah.” She gave me an odd look. I added, “I would want to make sure it didn’t hurt him. Shock therapy is being used on Autistic people and it’s not okay, so I would want to make sure it’s not painful or irritating.”

Joan replied, “Oh, it’s perfectly safe.” Well, that’s nice, but I added that there are those who do NOT practice safe and beneficial therapy.

My point of view on Autism is changing drastically, and this is an example of where people go blindly into situations and they forget to contemplate the desires of the Autistic person.

There are two schools of thought on Autism, those who want to “cure” or “fix” it, and those who don’t. Okay, maybe there are a few who fall in the middle. I was more on the side of fixing it until I began immersing myself in the Autism world by living it, studying it, and writing about it, and communicating with Autistic adults. I began to see how truly unique my son is and how much his Autism affects who he is.

Heck, we all have a little Autism in us.

In reading and talking with adult Autistics I hear many of them don’t want their Autism “cured” and some blast groups such as Autism Speaks for their drive to “cure” Autism. They like who they are. As a result of listening to their ideas, I began to see more and more of the qualities Jeremiah possesses.

I’ve also looked at the way Jeremiah has changed me, and I see how it’s drastically formed who his sister is. I feel I’m so different because of him. Yes, doing foster care changed me, but having two children with disorders and disabilities has wrecked my world, in a good way. A life changing way. My perspective of the world has changed, I have more compassion, I know that others may be dealing with underlying issues and therefore exhibit diverse behaviors. Although I have God given sensitivities, I have been made more sensitive to both of my children’s needs, beyond what would have normal for me.

Maybe I’m scared to remove Autism because the child I love so dearly would be different.

I don’t want to change Jeremiah, I adore him. It would be like me wanting to drastically change who someone else is, although I may not like certain aspects of who they are, it wouldn’t be fair for me to change them, and frankly I can’t.

The world needs to change, and Autism is one way to do that.
*********

*Names have been changed to protect privacy.

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my thoughts on Applied Behavior Analysis (ABA) – Autism

my thoughts on ABA
*The opinions expressed in this post are solely mine and based on our experience.

When the words “Your child has Autism” are spoken, most parents begin searching for ways to help their child. The psychologist offers advice, doctors suggest medication and therapy, friends refer to characters in movies or geniuses, other Autism parents recommend solutions that worked for their child. But one of the most common therapies you’ll hear about is Applied Behavior Analysis (ABA).

Autism parents invest tens of thousands of dollars per year on ABA, and many children spend thirty to forty hours per week in this intense therapy.

When I learned what true ABA is, I wasn’t a fan. Many therapists sit children down in a chair across the table and work intensely with the child. They will also focus on one skill such as putting a shirt on dozens of times in one session. This may work for some kids, but what about the ones who are constantly on the move, e.g. my son, Jeremiah? Jeremiah has learned to sit for longer periods of time, using fidgets* and routine, but working on something he’s not interested in (there aren’t many things at this time) would prove futile.

Some therapists use a reward system to get the child to perform, they may say, “After you put the puzzle together you may play with bubbles.” Jeremiah wouldn’t have been able to follow a similar direction until very recently. Even at this time he’s not quite there. Directions that are part of his daily routine are more at his ability level right now.

For example, because we’re working on “First/Then”* concepts at home and at school, he’s grasping what it means. I can take his doodle pad (which he loves and always has with him), and say, “Eat your snack first, then you can have your doodle pad.” But, to have him engage in an activity he doesn’t like, most anything besides puzzles, work boxes, peg boards, or coloring, you would have a meltdown with a crying, screaming child.

Frankly, I don’t want my child crying and screaming because someone wants him to learn his colors, look through a book, or get himself dressed. We push through on certain hygienic rituals like brushing teeth and taking a shower whether he’s crying or not, some things have to be done. The world can thank us later.

But, him crying and screaming because someone is making him learn to put his pants on or be involved in a group activity is not what I want for my child. I agree with constantly working with a child (with plenty of uninterrupted free play in between), we do this. We could work on education more, such as talking about colors and the like, however, we work on letters, shapes, and numbers on his doodle pad that he always has in hand.

Every time we get him dressed we walk through with words what he needs to do (in the beginning we used a lot of hand over hand teaching and less words), “Shirt over your head, arms in,” “Put your pants on, lift your leg, put your leg in.” It’s taken a while, but he is now helping to pull his pants on and has been taking them off for quite some time. 🙂

This is Jeremiah’s childhood and I want him to enjoy it like any other kid. I don’t want him miserable, working on the same skills over and over, hour after hour. Many ABA therapists will repeat the same skill over fifteen times in one session and I believe I’m being conservative with that number.

all children deserve a childhood

A family member recently asked me if ABA can work for some and not for others. Sure. ABA can produce skills, but in our case it hasn’t. We’ve used a modified form of ABA, but more on that in a bit. The true, follow the guidelines ABA has actually caused our son to lose skills. I’m sure many parents who stand behind ABA are shocked to hear this. You could say it was because of regression that he stopped using these skills, but he lost two, and they’ve never resurfaced.

When Jeremiah entered preschool he was using the sign language for “more” and saying, “maw” in the correct context. We shared this with his teachers, aides, and therapists, and most of them fostered his skill in the right way.

However, the speech pathologist did not.

Every time she worked with him, which was one day per week, she would do so at snack time. She would withhold his gold-fish crackers from him, and require him to use the sign for “more” and hand him ONE fish if he did. She would repeat this twenty or more times every time she worked with him. Because gold-fish crackers were highly motivating for him, that’s all she focused on.

Do you know what her tenacity resulted in? Jeremiah stopped signing and saying the word “more.” Completely stopped.

As for the modified ABA I mentioned, our amazing Behavior Specialist is the one who’s helped us with the adaptation. She’s not a fan of ABA in it’s true form either, but she will modify it for a child.

Here’s an example of modified ABA in a natural setting. We worked on something that Jeremiah was doing that we wanted stopped; he was hitting the t.v. during movies (sometimes because of excitement, other times seemingly just because). Lia* suggested we pause the movie each time Jeremiah got too close to the t.v. At first we pushed “pause,” walked up to him and gently moved him back the distance we wanted him from the t.v., and calmly said, “Scoot back,” as we moved him. Once he was a certain distance from the television, we pushed “play” and praised him, “Thank you for scooting back.”

As he learned what pausing the movie meant, we didn’t need to say anything (only praised when he did what was expected) because he moved back on his own. Lia also reiterated how important it is to…

focus more on his positive behaviors

…like praising when he does move away from the t.v. [ABA isn’t wrong, but I do think it’s taken too far], and when done in such a way, it’s taking childhood away from so many children.

The article, Would You Accept This Behavior Towards a Non-Autistic Child takes a look at how we treat those on the Spectrum. I highly suggest reading it and taking a look at how your child is treated at school, in your home, and in therapy. Ask yourself that question:

Would you accept this behavior towards a non-autistic child?

Next week I’ll be sharing some professionals thoughts on ABA as well as perspectives from adults on the spectrum and a mom who’s had a magnitude of success with her son (he’s fifteen, in college, and on track for a Nobel Prize) and hundreds of other kids with Autism whom she’s helped share their voice. Here is that article: more perspectives on Applied Behavior Analysis

*Jeremiah is 4 1/2 and nonverbal.

*Fidgets – sensory type tools used to calm a person. http://www.developmental-delay.com defines fidgets as tools that have
-Interesting tactile composition such as squeezable or spiky massagers
-Heaviness or pliability of the product
-Movement opportunities it provides our hands (can the child squeeze it?)
-Does Not make any noise, so it not a distraction to others
-Several different ones that are small enough to put in pockets”

 

*First/Then is simply having the child do an activity, and afterwards they get to do something they want to do. It can also be used to notify a child of an upcoming event. “First we are getting our pajamas on, then we will read a book.” Or if your child needs to leave an activity to do something they dislike, you can say, “First we’re going to wash hands, then you can play with the iPad.” Once learned, this phrase makes transitions easier, and works best if used in all their environments.

*Names changed to protect privacy.
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