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Why Must There Be Two?

  • Posted on December 19, 2014 at 10:00 AM

I’m not sure if I’ve revealed the specifics yet, but I know I’ve reported my intention to start a nonprofit organization. In fact, I intend to start two from the very start. So, why, you might ask, must there be two?

The goal of both nonprofit organizations is to seriously improve the quality of life available to and experienced by people with neurological disabilities and/or differences, regardless of the severity of those disabilities and differences.

In order to do this, you have to proactively address two different spheres of influence: advocacy and service delivery.

On the one hand, you must work at the (inter)national level. You must raise understanding, awareness, and acceptance. You must advocate change. You must influence society. You must influence legislation. And you must cooperate with other disability organizations to accomplish all of this. This is the advocacy sphere.

On the other hand, you must work at the local level. You must provide opportunities for enrichment (building daily living skills, building social skills, building work skills, building household management skills, building business management skills, etc.) that meet the specific needs and goals of each individual. You must provide opportunities for employment (career planning, job hunting, business start-up, seed money, and job or business maintenance) that meet the specific needs and goals of each individual. You must also provide opportunities for empowerment (self-advocacy skills, issue advocacy skills, opportunities to advocate in the community, opportunities to advocate at home or with family, opportunities to advocate in the workplace, opportunities to advocate at the regional, national, or international levels) that meet the specific needs and goals of each individual. And you absolutely must have a way to navigate the various programs, services, and opportunities that are available in the local community so that the needs of each individual can be met and their goals can be achieved in a cost effective manner so the maximum number of people can be served with the resources available while still meeting quality standards. This is the service delivery sphere.

If you put these two spheres of activity together under the same organization, you’ll get an ineffective, inefficient organization. If, on the other hand, you have both spheres linked but separate, you can produce a powerful, driven set of organizations that meet the complex needs of people with neurological disabilities/differences in both areas that matter most. The (inter)national organization will actively advocate at the topmost levels of society; the local organization(s) will actively deliver the individualized services that are most desperately needed by people with neurological disabilities/differences. There will, of course, be overlap by design: the national organization will “seed” the local organizations, develop appropriate policies, and distribute the capital necessary to “plant” the organizations, while also holding functional local organizations to the conduct standards set in the organization’s charter; the local organizations will “feed” issues and problems to the national organization, which the national organization is responsible for addressing as the advocacy organization, and they will also develop the skills and provide the opportunities for volunteers/employees to move from the local to the national level.

I’ve been around enough to know that the way things are done for people in need—in the U.S. at least—has a tendency to function in such a way that creates dependence without really solving problems. A set of services are provided and people who need help can choose among the options that are available. If enough people have unmet needs after those selections are made, then a new service is created to meet those needs. But people aren’t individuals. Decisions are driven by statistics, metrics, and policy goals. The idea isn’t to help people; the idea is to help demographics. The result is that people aren’t really helped in a way that satisfies their needs, facilitates their goals, or solves their problems. This occurs, in part, because these decisions are made far away from the people who are actually in need, by policy makers operating at the national and state levels.

My goal is therefore two-fold. Create a system and processes that work by actually working with individuals with neurological disabilities and differences. The system and processes will be flexible enough to be individualized, but also knowledgeable enough to leverage available resources to provide as help as much as possible, yet independent enough to fill in the gaps as needed. This will transform the quality of life for the people I understand best and am most passionate about; yet, it will also create a model that can be used by other organizations (the national organization would facilitate this) in order to truly meet the needs of populations that my program is not designed to address.

Usually this kind of holistic solution-oriented service delivery is restricted to select localities. A few local areas work together to solve problems. These solutions become case studies that are offered to other communities. The process is replicated, though the same results are not always achieved because the solution-oriented spirit of the process is gutted from the service delivery design. My hope is that by combining the local impact with the national reach, I can change this. So, there has to be two organizations, inextricably linked, but independently functioning. There must be two.

Summer Swim

  • Posted on June 18, 2014 at 11:10 AM

So this post is going to be a little bit late. Yesterday was a busy day and the content of this post was going to depend on what happened. I haven’t gotten a chance to write it out until now, but here’s what happened:

  • First, I had three paid assignments that were due. (I successfully completed two of them and put the third back in the public queue for somebody else to do, because I ran out of time and energy to complete it myself.)
  • Second, I had scheduled a meeting with the Sister Missionaries from our church for 4 pm. (I met with them and it was a good meeting.)
  • Third, I had to go with Alex to his first Summer Swim at 6 pm. (This is the main point of this post.)
  • Fourth, I had a sleep study scheduled for 9 pm. (This is the main point of my next post.)

So, I took Alex to his Summer Swim, which is a special program arranged by the school system. Now, it’s important to know that I wasn’t in the best frame of mind for this, because I was frazzled and stressed with too many pressing demands for a single day. Alex, on the other hand, was excited. He’d been excitable all day and telling him he was going swimming sent him through the roof. Not literally, but close enough to it.

Then, we arrived at the school. Except that it was the wrong school. By this I mean we were at the correct place to attend the Summer Swim session, but it was the wrong school in Alex’s mind. You see, Alex loves to swim. He swims two to three times a week during the school year. He swims in the pool at his school. He swims with his classmates at his school. And he loves it! He actually swims. But this wasn’t his school and it wasn’t his classmates.

This was disorienting. He didn’t want to get in this pool; he wanted to get in that pool; but, I managed to get him in the pool that was available. He didn’t want to swim with these kids; he wanted to swim with those kids; and I didn’t get him to interact with any of them. He was in the pool up to his waist, but that was it. He didn’t try to swim. He was too agitated to do much of anything. He just jumped and flapped his hands and made sounds of distress.

I thought if I could get him in deeper, he’d relax and enjoy the experience. I tried to coax him to dunk himself in the water and he jumped his way to one ladder. I blocked him and he jumped his way to the other ladder. I got there before him and he turned around and went to the other ladder. We went back and forth for ten minutes. Whenever we were face to face, Alex would pinch me. Whenever I tried to soothe him with a hug or by mushing his face (which he usually likes), he tried to bite my neck or my hands.

Then, I got the brilliant idea that if I could get him to the deeper end of the pool, where there were fewer people, he’d be able to relax and enjoy it. Remember, I was frazzled and hurried. So, I grabbed him by the belt of his little life preserver and pulled him out into the deep end. At first, he seemed like he was going to relax, but after a few moments he made a bee line for the ladder again. I tried again, pulling him out to the deep end, but he made it clear he wanted to go for the ladder again.

I blocked him and the first routine started over again, but he was even more agitated, so when we made it back to the first ladder, I told him we were done. It took some coaxing to get him up the ladder, despite all his efforts to get to the ladders before. I think he realized that I wasn’t really accommodating his needs and that it was more of a punishment for poor behavior. It made getting what he wanted (or what I’d thought he wanted) less fun for him. I dried him off, dried myself off, at least enough to get in the van, and I got him out of there. We arrived at 6:10 (which was on time) and we left at 6:35 (which was early).

Now, I readily admit that I didn’t handle this well. I wasn’t in the right frame of mind – that’s not an excuse, just an observation. Luckily, we’ll have another shot on Thursday. Maybe that one will go better.

Grooming Civility

  • Posted on March 14, 2014 at 10:00 AM

Self-help and life skills are all a part of raising a civilized child. There’s a sense of conforming to the norm, because it is normal for a child of a specific age to be able to dress, feed, and wash up by himself, as well as performing regular hygiene and grooming tasks, like brushing hair and teeth. In addition, when raising a child with autism, obtaining these skills is important for independence and quality of life purposes. So, yes, we are conforming to society’s expectations in a way that the child may not initially appreciate.

The problem comes into play when we expect or even demand that these skills be developed in the same way and/or on the same timetable as more typical peers. Such expectations and demands only lead to mutual disappointment and frustration. I’ve seen parents who have, at least for the most part, maintained the same timetable by make significant adjustments to the way the skills are developed. I’ve also seen parents sacrifice the timetable by waiting for the child to develop these skills at his or her own pace. I’ve tried both routes with mixed success, resulting in a rather mixed approach.

In the end, the question is not whether we need to conform to society in these regards; the question is how much we are willing to conform to society. Where we draw the line, as parents, matters. It impacts how we perceive our children and how our children are perceived by others. More importantly, it impacts how our children perceive themselves. It impacts the levels of chaos and order that exist within our homes. It impacts the comfort and adaptability of our children. It impacts their quality of life with regards to how expectations and methodologies relate to their frustration, their aspirations, their self-direction, and their self-authority.

In the end, our children will become adults. In the end, our children will find ways to communicate their own ideas, their own beliefs, and their own experiences. As we judge where our own parents drew their lines in the sand, so too will we be judged by our children. If you doubt that for even a moment, take a look around at the dialogues of autistics adults that pervade the blogosphere.

So, whatever struggles you face today, I caution my fellow parents to keep this thought in the back of your mind: What do you want your children to say about you when they can? Don’t forget that respect others’ personhood is part of civility, too. The way you teach your children to do that is to do unto them what you would have them do unto others. Autism doesn’t change that.

Opening Doors

  • Posted on February 17, 2014 at 10:00 AM

I’ve discovered a handy PDF file created by the State of Wisconsin called Opening Doors. This booklet helps parents, teachers, and students navigate the transition from high school to adult services in the State of Wisconsin, with the hope that the information will improve outcomes for students with disabilities. According to State Superintendent Dr. Tony Evers, “It is our mission to prepare Wisconsin’s students to become contributing members of their communities and the world by connecting youth to the resources necessary for a successful transition.” Funny, that’s the goal of most parents, too!

Unfortunately, it seems far too often we fail at this goal. Too many students are directed down paths proven to be isolating and disabling in nature. You see, people with disabilities have both abilities and disabilities. The training, encouragement, and support they receive are strong indicators of whether their abilities or disabilities will be the foremost forces shaping their lives. When we direct students down paths towards sheltered workshops, we are directing them to lives where their disabilities, not their abilities, shape their lives.

In renewing an old contact, I was advised, “DO NOT ACCEPT a sheltered workshop for your son. He will never make any money and will never leave. That’s very clear in the research and in practice statewide in WI.”

There are people trying very hard to change the way things are done in Wisconsin. Sheltered workshops and other disabling pathways are being diverted to make more pathways that provide students with disabilities with strong enabling forces in their lives, so their abilities, not their disabilities, can direct their lives.

Together, those of us who believe in the abilities of people with disabilities can change the way society chooses to provide for and support people with disabilities. Together, we can make sure abilities, not disabilities, are the dominating forces in their lives. No one person can make this change on their own, but together we can!

Voices: Susan Boyle

  • Posted on December 11, 2013 at 10:00 AM

“Celebrity” autism diagnoses aren’t terribly uncommon. Of course, in most “celebrity” diagnoses I’ve seen, it’s the child of a celebrity being diagnosed with autism and the celebrity using their fame to raise awareness and drive for a cure. It’s a relief, then, to see another voice take on the issue from an entirely different celebrity perspective.

Here are some quotes from an interview with Susan Boyle:

“It was the wrong diagnosis when I was a kid,” she says. “I was told I had brain damage. I always knew it was an unfair label. Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”

Unfortunately, this is a common experience for women with Asperger’s. For several reasons, it’s especially difficult to get an accurate diagnosis of autism when you’re a girl. What’s even more unfortunate is that this is still true. We’re making progress, but there’s still an assumption that the autism spectrum is primarily a “place” for boys.

“I am not strong on my own,” she admits. “When I have the support of people around me I am fine. I have a great team.”

There is an assumption that, because people on the autism spectrum have trouble with socialization, they have a lesser need for friends, family, love, fellowship, and all that goes with it. This statement is in direct challenge to that assumption and is consistent with the experience of many people on the spectrum.

“I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do.”

I would hope this is true, but considering the lingering prejudice against people with neurological differences, I fear it will not be.

Voices: Dr. Manny

  • Posted on November 27, 2013 at 10:00 AM

Dr. Manny threw his considerable support behind Chris Tuttle and the movement to employ people on the autism spectrum when he wrote a brief article raising awareness about Tuttle’s experience, the growing employment opportunities, and Dr. Manny’s expectations for society:

“No matter what, I will always stand up for the rights of people on the autism spectrum and try to spread awareness about this disorder. Fortunately, many industries today are starting to focus on creating employment initiatives for this population, which is such a wonderful enterprise. We want all people – regardless of disability – to have opportunities for independence and growth. But this can only be accomplished if we have a tolerant and understanding society.”

As much as I support and applaud this sentiment, as much as I empathize with Dr. Manny’s experiences as the parent of a child on the autism spectrum, and as much as I want to support all the good things Dr. Manny said and all the positive awareness he’s raised, I can’t help but get stuck on his opening sentence: “Today, I became aware of a story about a grocery store employee afflicted with Asperger’s syndrome, who was unnecessarily harassed by a female customer,” (emphasis added).

Contrast that brow-raising assertion with the original article, which stated:

“Tuttle-Virkler noted in her post that her brother was diagnosed with Asperger’s syndrome, a developmental disability characterized by difficulties in social exchanges and repetitive patterns or behaviors. Tuttle-Virkler said that the incident really upset her brother,” (emphasis added).

It’s hard to raise awareness about the abilities of people with disabilities while still using the language of disability-as-affliction.

An Impractical Joke

  • Posted on November 25, 2013 at 10:00 AM

Willy was in one of his classes. Maybe it started as soon as he got there. Maybe it took a little while for things to get going. All I know is what little Willy was able to tell me.

Willy’s teacher accused him of stealing a girl’s cell phone. He didn’t do it and he was very upset that anyone thought he had. He didn’t know what to do about it. He said he didn’t do it and he was telling the truth. But the teacher didn’t believe him. The teacher kept saying that Willy took the girl’s cell phone.

Then, the teacher told the class that, because Willy took the girl’s cell phone, the teacher was going to take Willy’s birthday. Willy will be turning 15 in a month and he couldn’t let that happen. He had to make the teacher stop saying these things. But he didn’t know what to do!

Maybe it’s because we’re reading about Ender’s Shadow by Orson Scott Card, which is the story of how Ender and Bean faced extraordinary circumstances and survived, even though they’re kids who are pitted against teachers. Maybe it was something else. All I know is that Willy’s reaction was extreme and out of character.

Willy just wanted to make his teacher stop saying these hurtful, false things. So, in a fit of anger, he put his hands on the teacher’s neck and “strangled” him to make him stop.

I don’t know what happened next, exactly. I know that Willy stopped. I know that the teacher reassured him that it was just a practical joke and gave Willy a warning not to do that. I know that Willy apologized and that the teacher promised never to play a practical joke on Willy again.

Willy was so confused by what happened and so ashamed about what he did that, when he went to bed that night, he didn’t even want a hug. He knew that strangling was wrong and we certainly reinforced that lesson. But it was also important that shame wasn’t the only thing he took away from this experience.

I wanted to make sure that Willy made better choices, that he apologized for his behavior, and that he didn’t make the same choice at some point in the future. But it was equally important that he not feel ashamed.

Time was on our side, because the next day was an appointment with his counselor. We talked about what the teacher had done and what Willy had done and what Willy could have done instead. Willy felt better.

“Most kids,” she said, “would realize by the time that the teacher said he was going to take Willy’s birthday that it was a joke.” Willy understands that now. But he didn’t at the time. This wasn’t a metaphor he was prepared to interpret. This wasn’t anything he was prepared to interpret.

My question was, “How could I have prepared him for this? What can I do so he gets it?”

The counselor told us that there would be things in life that Willy didn’t get at the time. The key was to prepare him to handle those things, even when he doesn’t get them. So, we talked together about what he could have done. Then, the two of them talked about what Willy could do in the future.

Willy doesn’t need to get practical jokes while he’s in them. He just needs to know that he can walk away, even when it’s a teacher, and get help from someone else.

Voices: Emily Willingham

  • Posted on November 20, 2013 at 10:00 AM

Emily Willingham wrote this heart-felt piece published by Forbes.

Usually, when I land on a Forbes page it’s because I’m researching a piece for a client. Forbes is a fount of respectable business information. But this time I landed on a piece decrying Autism Speaks. In Forbes. That’s gotta hurt!

Apparently Suzanne Wright penned a little missive that pissed Emily off and Forbes is quite the platform for a scathing response like this:

“It’s odd that Wright would argue so strongly for supports given that, according to the Autistic Self Advocacy Network [their statement on Autism Speaks is here], her own organization in 2010 devoted only 4% of its budget to “Family service” grants. And Autism Speaks’ track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent.”

I am trying to be more respectful of the wider community of voices and generally I do a pretty good job of it. But I can’t help but take pleasure in reading Emily’s Forbes-worthy critique of the “science” and untenable position of Autism Speaks.

Alex is Still a Mystery

  • Posted on November 8, 2013 at 10:00 AM

During the last post, I talked about one of the results of Willy’s IEP. I just had an IEP meeting for Alex, too, which went rather differently. The primary result of Alex’s meeting is that Alex still baffles those of us who are entrusted with his care and education. Big surprise, huh? In discussing our need to grapple with Alex’s needs, once again a resource was brought up for consideration.

This resource first arose when Alex was ending his elementary school education. The facility houses a considerable number of professionals who, over a period of two months, analyze and assess a child more thoroughly than would otherwise be available to determine unmet needs and unknown solutions. It’s an in-patient facility, which means Alex would be living there temporarily.

The first time this came up we were told that it involved signing over temporary custody (or something like that) to CPS. That put a stop to that. This time when it was brought up that was the first thing that came to mind. I told them if that was still the case, then it would never happen, because CPS representatives have already expressed an interest and an intention to institutionalize Alex.

OVER MY DEAD BODY!!!

I mean that literally. There is no way I will allow Alex to be institutionalized for being a mystery while there is a breath left in my body. As long as I am alive, Alex will not be institutionalized. And, to be perfectly clear, a lot more people than just me would have to die before the government would gain enough traction to enforce that option.

Granted, in-patient care is dangerously close to institutionalization. But it’s not the same thing. The differences make it a potentially viable option if the benefits would be sufficiently substantial. But the benefits won’t even be considered if it involves signing Alex over to CPS.

OVER MY DEAD BODY!!!

And, just so there is no doubt about the strength of my feelings on this matter, I’ll let you all know right now that I intend to HAUNT anyone who dares to institutionalize my child after my death.

Yes, my son is a mystery. I’ve accepted that. I understand the drive to better understand this mystery and I share it. If that means we must be deprived of Alex’s company for a month or two, then I can live with that. But I no longer have the luxury of idealism when it comes to trusting the government. The local CPS agency burned that bridge years ago and nothing on this earth can build it again.

The End of OT

  • Posted on November 6, 2013 at 10:00 AM

Surprise! OT is ending! Not for everyone, of course, or even for everyone in my household. I recently had Willy’s IEP and we discussed how he no longer needed OT services. Yay?

Well, yeah! For the last year, Willy’s OT services have only been on a consult basis. The idea was to create strategies that Willy could implement independently within his various classrooms to manage his sensory needs, while staying in class as much as possible to meet those needs. This approach has been so successful that the consults are no longer needed. They were kept in place primarily to transition him to his high school experience.

Now that Willy’s been in high school for a couple of months, Willy has made his adjustments. He’s not wholly comfortable in his new environment, as indicated by his rather compulsive need to sharpen pencils to exert a sense of control over that environment, but he is making effective use of his strategies and he is also fully integrated into his classes. He’s able to advocate for his own needs and generally does so effectively.

There’s still progress to be made, but it’s no longer about OT and sensory regulation. The occupational therapist will be available if things change, but for now she’s not needed. That is big, big progress for my young man! So, yay it is!