Showing posts with label services. Show all posts
Showing posts with label services. Show all posts

Wednesday, September 11, 2013

We Do Not Cross the Line

Jennifer Byde Myers
jennyalice.com


Just after the recent murder of Alex Spourdalakis, yet another parent has attempted to murder her autistic child.

Services to help families are not available to the degree they are needed, often leaving parents of children with intense needs feeling abandoned, depressed, suicidal and, in some cases, homicidal.

I just sincerely wish these conversations could be separate. They must remain separate.

I know how it happens, how the conversations seem like they should go together. As parents of kids with intense needs, medical, mental or physical, we are each slogging through life, with easy days and hard days and harder days, until something really bad happens, then we are triggered to say to the world, "See, look how hard this is. Why doesn't anyone care?" But the problem is that caregivers say this at the very same same time that someone was trying to kill their child. The minute you tie those ideas together the conversation changes into, "See, look how hard this is. We told you. Have empathy. The poor mom was really struggling. You can't blame her."

But you can. You must blame her. We must unitedly and unequivocally say that we can blame her because she tried to murder her child, and those other caretakers, they actually killed their children. We can't "cut her slack" because she was having a hard time. We can't even cut her slack because she had been injured by her child, badly. We cannot say, "We understand why she did it. You know her life was so hard because of her daughter,  because she didn't have enough help, because she was burned out, because..." Because what? So what do you mean exactly? So it's understandable when there are days or weeks, when life is hard...

Like when my son didn't rest...for years?

He didn't sleep, he screamed. He bit himself until he bled. He bit us and we bled. He lashed out. He threw himself to the ground. He broke my nose. He gave black eyes to me and one to his grandmother. We went to doctor after doctor, and therapy after therapy to no avail. We had no medical insurance for him because he had pre-existing conditions. We paid the bills with credit cards. Our life fell apart a little bit, a lot of the time, for several years. There are parts, emotional parts, that are still raw. It was very hard. I was very sad, and hope was hard to find on most days. So because it was hard, because almost every hard thing led back to my precious boy who was beside himself writhing in some kind of anguish that no one could identify, unable to speak to us and tell us what was wrong, so it would have been okay to kill him? Of course not.

NEVER OKAY.

...and I know some of you know her, that mother, and maybe I'd feel differently if I did, but I don't. I can tell you this, if my best friend tried to kill her son, you can bet your ass I'd want her in jail. I would feel horrible. I would be certain that I had failed her as a friend. I would mourn the loss of my friendship, but those things are about me, and it would not change the fact that we cannot even intimate that there are excuses as to why we can kill our kids. I would want her in jail, held accountable without question. We can add in all of the complexities of our weak family support systems, and lack of services, and all of those complexities may be real and truly horrific, but they do not, ever, explain away the fact that this woman tried to kill her child.

We can't cross that line if we want everyone to value our kids and give them an equal place in society, because in every other way that's what we ask people to do. We want our children to have a place in a proper educational setting, and we want them to be able to go to the movie theater and grow to have meaningful work, and a safe place to live, and all sorts of basic rights. Then when it comes to the most important right, the right to live, that's where you cross the line?

I thought we had all decided that we don't want our children to be  marginalized and put to death because they do not contribute enough to society. Don't we want our children to be treated as deserving to be called wholly-human? A human who has every right not to be murdered because of their neurological makeup? When we tie the two conversations together it glares at me, and I am not autistic, so I cannot imagine what it would feel like to be autistic and read that a parent could, "see how that could happen." I don't think most parents think that's what they are saying when they offer empathy, but even said eloquently, this is all I hear...my autistic child is not as valuable.

but there can be no excuses.

We Do Not Cross the Line.

A version of this essay was previously published at jennyalice.com. 

Friday, November 30, 2012

Congressional Autism Hearing Recap

The stated goals of yesterday's Congressional Oversight and Government Reform Full Committee Hearing: “1 in 88 Children:  A Look into the Federal Response to the Rising Rates of Autism” were to "...get a clearer picture on what is being done, what questions still need to be answered and what needs exist for those children, adults and families who live with an Autism Spectrum Disorder."

This hearing was notable for its precedent-setting inclusion of autistic representatives. Committee Chair Darrell Issa noted that as long as he heads the committee, it will stay open to autism concerns and may even try to find funding to address them. Video coverage of the entire hearing is embedded at the end of this post.

The hearing witnesses (and each's official testimony):
  • Alan Guttmacher, M.D. (testimony)
    • Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health
  • Coleen Boyle, Ph.D. (testimony)
    • Director of the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
  • Mr. Bob Wright (testimony)
    • Co-Founder, Autism Speaks
  • Mr. Scott Badesch (testimony)
    • President, Autism Society
  • Mr. Mark Blaxill (testimony)
    • Board Member, SafeMinds
  • Mr. Bradley McGarry (testimony)
    • Coordinator of the Asperger Initiative at Mercyhurst, Mercyhurst University
  • Mr. Michael John Carley (testimony)
    • Executive Director, Global and Regional Asperger Syndrome Partnership
  • Mr. Ari Ne'eman (testimony)
    • President, Autistic Self Advocacy Network
During the first part of the hearing, outgoing Rep. Dan Burton let thoroughly debunked mercury-autism and vaccine-autism causation pseudoscience theories fly, despite CDC representative Coleen Boyle's calm reiteration of actual autism facts and figures, and reminders that the CDC's 1 in 88 autism numbers point to underdiagnosis of existing autism numbers rather than a rise in autism rates. Several congressional committee members could have benefitted from reading TPGA's Mission Statement's primer on critical autism thinking & pseudoscience checklist before the hearing.

In the second part of the hearing, testimony was more varied:
  • Autism Speaks co-founder Bob Wright described his eleven year old autistic grandson Christian's regressive autism as being "...this pit. We lost a little boy we knew. It wasn't like he was a disabled person who got more disabled," and described the CDC as a passive organization. 
  • The Autism Society's Scott Badesch was interested in finding better supports and services for autistic people like his own 25-year-old son, as well as appropriate education and job opportunities, working with the CDC, and reaching out to under-served populations -- on having government services be "outcome based." 
  • Mark Blaxill from SafeMinds ably demonstrated confirmation bias, in calling autistic children "sick," making accusations of "malfeasance," flogging debunked mercury/vaccine-causation, and denying CDC evidence of autism underdiagnosis by testifying under oath that "...before 1930, the rate of autism in the world and in America was effectively zero" -- when this is true only in that the label "autism" did not exist at that time. 
  • Bradley McGarry talked about Mercyhurst University's Asperger's Initiative's work on building a foundation of self-advocacy, social skills, and academic progress -- and the need for more internships and job coaching. He describes the under-education and underemployment of autistic people as both unnecessary and "critically unfair."
  • Michael John Carley of GRASP forcibly disagreed with previous talk about a health crisis, averring that we are in a "services crisis." He talked about the need to focus on "where our greatest need lies ... in the present" rather than research, which focuses on the future. He said that most autism families do not have the proper "...services, interventions, and educations available to their children," and described autistic adults as "starved for housing, therapies, and employment opportunities." He emphasized the need to understand "the fiscal cost of not providing services." He also pleaded with those listening to remember that most autistic people can "read what's being written about them, and hear what's being said about them." As he said this, many audience members shook their heads in disagreement. We recommend they read TPGA's essay on The Least Dangerous Assumption.
  • The following is an excerpt from ASAN's Ari Ne'eman's official testimony. He decried the damaging rhetoric of an autism "epidemic," and focused on AAC, services, evidence-based approaches to demonstrating that autistics have always been with us, and civil rights. Mr. Ne'eman was given further opportunity to expand upon income, gender, racial and language barriers with respect to autism and disability by Rep. Davis during the second panel's Q&A session.
    "Chairman Issa, Ranking Member Cummings and esteemed members of the Committee, thank you for the invitation to speak to you today on federal policy regarding the autism spectrum. My name is Ari Ne’eman and I represent the Autistic Self Advocacy Network (ASAN), the leading national advocacy organization run by and for Autistic adults speaking for ourselves. As an Autistic person, I want to begin by thanking the committee in particular for hearing from self-advocates – that is not always a given in the autism world and I am profoundly grateful to both the majority and minority members and staff for ensuring that we are represented at this hearing about us.

    "Over the last decade, we have seen growing public attention towards the autism spectrum, in part driven by rising rates of diagnosis. Although additional public attention has provided an opportunity for greater visibility to the idea of autism, such visibility historically has not translated into attention or resources on the issues that matter most to Autistic people and our families.

    "There are a variety of reasons for this – one of the most prominent of which is the history of under-representation of adults on the autism spectrum in policy conversations about us. Additionally, one of the most important things to remember in discussing federal policy regarding autism is that the vast majority of publicly financed resources that those of us on the autism spectrum interact with carry the word disability rather than the word autism. As a result, my testimony will touch on both federal policy that is specific to autism as well as general disability policy issues, such as Medicaid, that significantly impact Autistic people and our families.

    "First, the majority of federal attention focused on autism in particular comes in the form of research funding. While we have been pleased to see an increase in federal autism research dollars over the course of the past decade, it is very important that we evaluate how we are spending that money. I am a big believer in the old maxim, “In God we trust, everyone else please bring data,” so let’s turn to the data and see what it shows us.

    "Of the approximately $217 million dollars that the National Institutes of Health (NIH) invested in autism research in 2010 (the most recent year for which data is available), only a meager 2.45% went towards improving the quality of services and supports available to Autistic people and our families. Only 1.5% went towards research that addresses the needs of Autistic adults. When compared to research on questions of causation, etiology and biology and diagnosis, the percentage of the autism research agenda focused on the actual needs of Autistic people in order to improve their quality of life is miniscule. We are pro-research, but the research agenda must be re-balanced to incorporate both causation and quality of life.

    "This matters. It matters more than I can possibly articulate, but I will try to do so, nonetheless. I remember recently visiting a service provider in Manhattan earlier this year to learn more about how we can improve disability employment outcomes for people with severe disabilities. While I was there, a non-speaking Autistic man in his mid-20s came in with his father. They were looking for some help trying to find him a job or at least something meaningful to do with his day. I asked him some questions and his father helped give responses, but it was immediately clear that his son knew exactly what I was saying, he pointed out what he was interested in, he shook his head at what he had no interest in, he raised his hands when he was excited. He had plenty to say and clearly rarely got the opportunity. I think about that young man – who probably wasn’t that much older or younger than me – often, and particularly at times like this.

    "Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case -- Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard.
    "If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today. I am not here today to speak for every Autistic person – that’s impossible. What I am here for is to argue for every Autistic person to have the same opportunity to communicate that I have come to enjoy thanks to the support that I have been lucky enough to receive in my life."

November 29 Congressional Autism Hearing Video:




Additional hearing coverage and insights (will update as new posts pop up):
If you missed sending in your concerns to the committee beforehand, or if you have additional input for them, please note that you can still send your comments and concerns to the committee via online fax (sincere thanks to Matt Carey for the link).

Friday, February 24, 2012

Two Stories: Autism's Financial and Racial Limitations

Kerima Çevik
theautismwars.blogspot.com

Several years ago, I attended a meeting of parents and care providers to discuss the lack of county services available for their loved ones on the autism spectrum. At the meeting, an African American medical professional told me something that still gives me pause: "Autism is a disability for the rich," she said. “Only the wealthy can afford the costs of the intensive early interventions we as parents need to help our children succeed." She continued, “As African Americans, we are disproportionately caring for our children on the spectrum as single parents, with limited means, and are dependent on institutions like our public schools to give whatever supports they can."

As I continue my three year fight for appropriate supports for my own child, I ask myself each day, “Was my acquaintance correct? No matter how diligently I try, no matter the effort I make, will I be unable to provide my own child with the help he needs because of financial and racial limitations?”

Two stories show this disparity of care, resources, and options in a way that leaves me with heartbreaking concern. A Journey into the World of Autism is a series of photographs with commentary, about an against all odds, full on battle for the dignity and civil rights of a 14 year old African American boy, Daniel Tuttle Jr. Daniel was given a diagnosis of autism when he was 2 years old. He never received early interventions or any support services. His battle for services is still being fought by a woman who is not his mother. She was his first daycare provider as an infant; when she heard Daniel's mother was out of work and overwhelmed trying to manage his care, she did not hesitate to go through the process of becoming his care provider.

Autism Lives Daily in Our House briefly outlines the story of Jack Drinkwine, a white child diagnosed with autism who is receiving intensive interventions and supports. He has teams of medical and educational professionals working with him to improve his ability to navigate his world. Jack's mother, a university professor, discusses the combination of therapies and supports paid for by a combination of funding that Daniel Tuttle's care provider could never hope to achieve.

Daniels is homeschooled and sent to a speech therapist. Daniel's only other therapy, administered by his care provider, is a GFCF diet and the basic set of the shoebox task system, the foundational exercises in the TEACCH method. Daniel's care provider continues to try to place him in a safe educational environment where he is able to adapt to the classroom and receive at least minimal services and supports. Meanwhile, Professor Drinkwine advises other parents to acquire the intensive interventions for their children that she has, never considering that many parents and care providers do not have the resources available to them that a family with two working parents -- a university professor and a high ranking military officer -- does.

Is this disparity of service placing African American children on the spectrum at risk for more confrontations with aversive behavioral management techniques, fewer educational and therapeutic supports and a greater risk for either institutional care or catastrophic encounters with the criminal justice system as adults? It is a chilling thought for me as I look at my dark skin and my deeply autistic son.

Please read both articles and let me know what you think:
More on Daniel Tuttle Jr. from DC & NYC Photographer Eli Meir Kaplan: Against the Odds

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This article was previously published at theautismwars.blogspot.com

Wednesday, January 25, 2012

DSM 5 Autism Criteria: Clarifying Impact, Taking Action

Interview with Dr. Gil Tippy
Clinical Director of The Rebecca School, Manhattan, New York
www.drgiltippy.com

How are the DSM criteria for autism changing? From the official site:
"A single spectrum disorder [i.e., folding in Asperger Disorder and PDD-NOS] is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints.”

"Three domains become two:

1)     Social/communication deficits
2)     Fixated interests and repetitive behaviors

"[because] Deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities."
We spoke with Dr. Tippy about what the proposed revisions to the DSM 5 will mean for Autistics, autism families, and autism professionals. Dr. Tippy also outlined actions everyone in the autism communities can take to prevent these changes from cutting off critical autism services and support.

Why do you think people are so concerned about the DSM 5 changes?

It's important to remember that these changes are not new news. They've been in process for the past four years, and these guideline changes have been posted publicly for the past 18 months. What has happened is that Dr. Fred Volkmar, who used to be on the committee but left the working group, decided to do a study to see how many kids diagnosed under the old criteria would meet the criteria for the new Autism Spectrum Disorder diagnostic category.  His study concluded that some of the kids who previously were diagnosed with PDD-NOS and Asperger Disorder would no longer meet the criteria for Autism Spectrum Disorder. The working group that is developing the new criteria felt that [Volkmar's] study did not take into account that a good diagnostician, a good Clinical Psychologist for instance, would look carefully at the child in light of the new criteria, and then diagnose appropriately.

I have to say I agree with both sides of this disagreement. I think that no child or adult, previously diagnosed with an Autism Spectrum Disorder by a thoughtful clinical professional should worry that he or she, or their child, will not be diagnosed appropriately with the new criteria for Autism Spectrum Disorder. However, I do believe that there is plenty of reason to worry, and for raising the alarm, Dr. Volkmar is to be thanked.

How will the changes to the DSM 5 affect eligibility for an autism diagnosis and services? That seems to be folks' concern, based on Dr. Volkmar's report and his statement about nipping the "autism surge" "in the bud."

The changes are not going to affect people who are diagnosing or treating people with autism. A good diagnostician is careful and thoughtful, they should see the overall picture of a person, their symptoms. The new criteria urges talking to family and other treatment professionals, but -- again -- a good diagnostician should already do this.

People won’t necessarily lose services because of the change in criteria. If, for instance, you had Asperger Disorder, you wouldn't lose support -- you would lose the Asperger diagnosis and instead have an autism diagnosis, on the less severe side of the spectrum. Same with PDD-NOS -- if you currently meet the criteria for that diagnosis, you'd meet the new criteria for an autism diagnosis. It’s worth mentioning that many kids and adults with Asperger's and PDD-NOS aren't getting appropriate services right now under the current diagnoses!

The problem is not with the changed definition or service providers, it's with the people paying for services. People who have services now may lose them because insurance companies could use the new guidelines to disqualify people. This makes sense; corporations' missions are about cutting costs; they may use the new criteria to say, "Well, you don't have a psychiatric disorder." While it's reasonable for companies to cut costs, it is not reasonable if it unfairly affects quality of life.

It all depends on the way in which the federal government makes these criteria part of the Affordable Health Care Act, which will be finalized by 2014. What is critical, where we need to take action, is in letting our state and federal legislators know that we vote, that we are watching this issue closely, that we demand appropriate coverage for autism, and that we will not compromise.

The federal government will be watching key states like California and New York closely to see how they legislate autism coverage -- and will use those rulings as the basis for its decisions. Once everything is formalized, local school boards will respond to state guidelines, which will in turn be based on Federal guidelines. So, it's especially important that we all take action now at the state level, especially those of us who live in key states.

Everyone needs to use their voices, needs to get together and say, "You can't exclude us! You can't legislate us out! We have power!"

What will the new criteria mean for adults?

It affects all ages; it doesn't matter if you are 60 or your child is 18 months old and starting to show signs of autism.

What are the goals of the DSM 5 Task Force with regards to autism and the new criteria?

I think the intent of the DSM 5 task force is to make things cleaner and easier for the people who will be using the criteria. This may be especially useful for diagnosticians with less experience. (Task force member Catherine Lord has also stated a goal of ensuring "...autism was not used as a 'fallback diagnosis' for children whose primary trait might be, for instance, an intellectual disability or aggression.")

I work in a school, I know there are other forces at hand -- and if you don't speak up, people who don't have you or your child's best interests at heart will be making decisions that affect them. We have to speak up, we have to do our own lobbying -- because you know that other special interest lobbyists are going to be trying to affect policy as well.

I don’t believe that these clinical diagnostic guidelines will affect one thing, not until state legislation passes, at which point federal guidelines will be based on the new state guidelines as an example of what's reasonable. Once the Affordable Health Care Act becomes law in 2014, federal legislation will determine who gets paid, and who gets treated.

People need to understand that the DSM 5 will be published, the issue is how people are allowed to interpret it. Again, advocacy groups need to get out in front!

What do the new severity scales mean? [Follow link, click Severity tab]

The new criteria will have a scale for social/communication, and restricted interests: Level 1 is "Requiring Support," Level 2 is " Requiring Substantial Support," and Level 3 is "Requiring Very Substantial Support."

That's where we need to lobby -- we need to make sure insurance companies aren't allowed to split people off due to their severity level, or say "We're not going to pay for a level one, for an 'awkward adult.'" This is especially important once young adults get out of school and enter society.

Officials get elected based on promises to cut costs -- what if they say, "We'll restrict services to Level 3! That's how I'll balance the budget!"? People are right to be worried!

What is your overall message about the DSM 5 revisions and autism?

The proposed changes in diagnostic criteria are worth being worried about, but not because the clinicians will exclude people from treatment; they will continue to diagnose and treat appropriately. If you, or your son or daughter has an appropriate diagnosis on the Autism Spectrum now, responsible clinicians will find that you or your children meet the criteria for Autism Spectrum Disorder under the new guidelines. Again, the place where we need to put our energies is in advocating with our elected officials on the state and federal level, to not allow our children to be excluded from appropriate treatment based on the new severity scales associated with the diagnosis.

The time to do this advocacy work is now, as health care legislation is in the works, and powerful lobbying groups will go in and speak to your legislators if you don’t. Parents and people with the diagnoses need to be the people who are directing this legislation. If you do not feel like you can go directly to your representatives, go to the not-for-profits you support who hire lobbyists to influence legislation.  Tell them that you do not wish to have them advocate for one behavioral treatment or another, but that you want them to advocate for appropriate services under the new law. Insist with them that they need to follow your wishes, or you will no longer support them financially. There is power in numbers, and if we all joined together we could assure a better future for ourselves and our children!

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Additional reading:

Friday, November 4, 2011

Autism Spectrum Disorders and Physical Therapy: The Motor Connection

Dr. Joni Redlich, DPT
www.kidpt.com

Movement is an integral part of our social, emotional, and physical lives. A 4-month old excitedly kicks her arms and legs in response to the funny face dad makes, so he does it again. An 8-month old will crawl to retrieve her favorite rattle, shake it to hear the sound it makes, and then look at mom to share the experience with her. An 18 month-old takes moms hand, walks her to the kitchen, and says “juice” while pointing to the refrigerator. As a child grows, the length and complexity of movement sequences become more sophisticated.

Children with autism spectrum disorder (ASD) often cannot coordinate the myriad of movements needed to complete these interactions. Although children with ASD are often not diagnosed until they are far out of infancy, studies of home videos of children later diagnosed with ASD showed motor differences that had been undetected as infants (Teitlebaum 1998, Teitlebaum 2004).

Motor differences are often due to motor planning challenges, sensory processing differences, atypical reflex development and underlying decreased tone. Motor planning challenges make it difficult for a child to time, sequence, and execute a movement, such as reaching for an object, crawling towards mom, or activating a toy. Sensory processing differences often cause children with ASD to take in misinformation from the environment. The child may be over or under sensitive to smell, sight, sound, touch, or movement. Low tone, or decreased stiffness of the muscles, requires the child to use more energy to move, can delay motor development, and further alters the sensory feedback a child receives during movement. The child with ASD will learn to roll, crawl, and walk, but the quality of their movements may be poor. As the child gets older, they may struggle to function at more sophisticated levels when they have not mastered these core skills. As a result of differences during development, children with ASD often have deficits in equilibrium and righting reactions (moving the body to maintain an upright position), protective reactions (putting a hand out to catch yourself when falling), and movement strategies (persistent w-sitting). These differences may present as clumsiness, lack of coordination, lack of attention, hyperactivity, gross motor skill delay, flat feet, toe-walking, postural instability, poor posture, decreased respiratory control, oral motor difficulty, and flexibility restrictions (Ghaziuddin & Butler, Gillberg, Kohen-Raz et al., Hallet et al., Vilensky et al.).

During a Physical Therapy Evaluation a child’s neuromuscular, musculoskeletal, and cardiopulmonary systems are assessed. The therapist will look closely at a child’s ability to take in sensory input and control motor output. They will assess the facilitating and limiting factors for different gross motor skills, such as walking, jumping, running, stair climbing, and kicking a ball. Through play, the therapist can observe how a child uses his balance reactions, protective reactions, and motor planning skills, and the strategies that the child implements to move in and out of different positions. The therapist also observes the child’s posture in a variety of positions, and how the child’s posture affects their breath control, oral motor control, and vocalizations. The therapist will analyze which muscle groups are being overused and which muscle groups are being underused. Joint range of motion, especially for overused muscle groups, such as the calf muscles for children who persistently walk on their toes, is measured. Joint laxity is also assessed, especially for overstretched joints, such as for flat feet or for a child who often locks their knees and elbows.

During a Physical Therapy Treatment a child may work to:
  • Improve postural control to increase stability during fine motor, gross motor, and self-care activities.
  • Improve static balance to improve motor control and attention and decrease impulsivity.
  • Learn to perform the ideation, sequencing, timing and execution components of motor planning.
  • Maximize sensory processing and organization skills to put into controlled motor skills.
  • Lay down the foundations of gross motor skills to support participation in community and peer activities.
In addition, Physical Therapists will work with children and their parents to help the child to develop an active lifestyle. Exercise is important both for health and for self-image, such as keeping up with peers in gym class or in sports activities. In addition, aerobic exercise can decrease behavior problems and an active lifestyle will naturally give a child more sensory input.

To conclude, children of all ages learn through movement and need to master core motor skills in order to maximize their overall potential. Beginning as infants we develop stability so that we can learn to use our hands and feet independently from the rest of the body. We also learn how to manipulate the environment and how to move our bodies within it. We use movement to bond and communicate with others and to explore our world. Limitations in motor skills can lead to difficulty with all areas of development. Physical Therapy can be a beneficial part of a team approach to help children with ASD to be as successful and independent as possible in school, home and in the community.

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References

Ghaziuddin, M. and E. Butler (1998). “Clumsiness in autism and Asperger syndrome: a further report.” J

Intellect Disabil Res 42 (Pt1): 43-8. Gillberg, C. (1998). “Hyperactivity, inattention and motor control problems: prevalence, comorbidity and background factors.” Folia Phoniatr Logop 50(3): 107-17.

Hallet, M., M.K. Lebiedowski, et al. (1993). “Locomotion of autistic adults.” Arch Neurol 50(2): 1304-8.

 Kohen-Raz, R., F. R. Volkmar, et al. (1992). “Postural control in children with autism.” J Autism Dev Disord 22(3): 419-32.

Teitelbaum, O., Benton, T., Shah P.K., Prine, A., Kelly, J.L., Teitelbaum, P. (2004). “Eshkol-Wachman movement notation in diagnosis: The early detection of Asperger’s syndrome.” PNAS; 101(32): 11909-11914.

Teitelbaum, P., Teitlebaum, O., Nye J., Fryman, J., & Maurer, R.G. (1998). “Movement analysis in infancy may be useful for early diagnosis of autism.” PNAS; 95: 13982-13987.

Vilensky, J.A., A.R. Damasio, et al. (1981). “Gait disturbances in patients with autistic behavior: a preliminary study.” Arch Neurol 38(10): 646-9.

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A version of this post was previously published in Autism Spectrum, Winter 2005.

Wednesday, June 29, 2011

Unfriendly Consequences: What Competition for Limited Resources Does to the Autism Community and Autism Families

Autism and Oughtisms
Autism and Oughtisms

What happens to a community of people facing the same challenges, forced to compete for limited resources (particularly government resources)? The effects I’ve seen at a local level – here in New Zealand – appear to be replicated overseas, according to what I’ve seen in debates and conflicts in the online communities.

There are various government provided supports (in terms of finances and services) that require you to prove your child’s autism is more severe than other children’s autism. Sometimes this is done in direct competition; a specifically limited number of packages of assistance are made available within the country, to the point that if your child qualifies for the support, there is one less assistance package available for another family. Other types of support are available to every child on the spectrum, but the level of support you receive, or how long you receive it for, depends on the severity of your child’s autism.

These schemes are set up in this way to respond to the reality that there are not unlimited funds and services available, and that to make those resources available to every child with autism, would dilute the usefulness of them to anyone since they would be spread too thin. So the government has had to come up with some way to respond to the different levels of need present within the autism spectrum; acknowledging that it is a spectrum where one person can be affected very differently from another. In order to achieve this understandable goal – getting scarce resources to those who need it the most – they’ve had to create categories and corresponding terminologies of severity. Parents must learn to understand and use those categories in order to understand and access the services on offer for their children.

The consequences of all this can be quite significant. I’m going to go through the ones I am aware of.

One of the most disturbing things I have heard time and time again about my son, from other parents of autistic children, is how lucky I am that his autism is so severe. This has always been said to me in discussions about the schooling options we have available to us; if his autism was less severe he wouldn’t have qualified for the level of support he has, he’d have been expected to take part in mainstream schooling with little or no help, as is true for many “less severely” affected autistic children. In a world where severity is the difference between lots or hardly any schooling support, it makes sense to say to someone like me, how lucky I am. Yet every single time someone says that to me, I get quietly angry. I’m lucky my child has life-long challenges? How dare they! I know why they say it but it still pits me against them emotionally.

It also makes me feel like I have to defend my child’s needs and severity to the other parent, or apologise that we get the help they don’t. I shouldn’t have to do that or feel that way, yet the system is set up in such a way that my child’s needs were very probably seen as trumping their child’s needs; the fact we got assistance may actually mean their child was less likely to have received the help they also desperately needed.

In this situation – them telling me I’m lucky, me defending and apologizing for the services we receive – we parents are pitted against each other, and the system stands there like some accepted monolith. The attacks and upset should be directed at the way the system is set up, but changing the system is a slow and overwhelming task; it’s much “easier” to accept its existence and rules, and turn our frustrations on each other.

The way we have these discussions – even the ability to have these discussions – shows we have internalized and maybe even accepted the categories of severity or functionality presented to us by the service providers. Just the constant use of their terminology, requires us to also think using the terminology; it inevitably starts to sink into how we understand our own and others’ autistic children.

In the process of filling out the endless forms to get these services and assistance from the government in the first place, I was often told to exaggerate my son’s challenges. This advice came not only from parents who had been through it all before, but also from the government employees who aided the application process (the forms are filled out by one arm of the government, then another arm evaluates it, and a third arm provides the service!). Sometimes the advice of exaggeration came in the form of “tricks of the trade”: Provide plenty of examples of the difficulties and don’t hint at his capabilities, use the right emphasis, etc. Other times the advice was to very literally exaggerate close to the point of dishonesty.

I don’t work that way; I spent nine years of my life studying law and philosophy (and then teaching the same), so to knowingly lie in such a situation goes against my well-argued, well-understood (and well-entrenched) principles, even if it would supposedly benefit my son. I very strongly hold to the view that if you think the system should be different, then you fight to change the system for everyone; you don’t lie and cheat in such a way that leaves the bad system in place for everyone else and even reinforces its continuance. I didn’t need to exaggerate my son’s condition to get the help he needed, but because it’s such widely known advice, I still have to deal with the fall-out of the advice: People presume that I must have exaggerated or known some special trick to get my son the help he receives. It’s as if the receiving of that assistance for my son is evidence of my immoral character.

Yet again, I am put in the position of defending myself and the help my son gets, against parents who didn’t get the help (presumably in part because they were too moral to help the application along by lying).

This effect of competition for limited resources starts before you even fill out your first form. It starts at the point of diagnosis. Your child’s challenges might be described and categorized in difficult ways if they are borderline autistic or have co-morbid conditions. The pediatricians and health professionals know that if you get the “right” diagnosis, you are more likely to get the government assistance your family and child desperately need. Some health professionals are so in-tune with these concerns and the level of need of their clients, that they have over time established reputations as the “go-to” person, to get an autism diagnosis which will allow you to get your child the help you want to get them, even if your child has some other challenges that don’t fully fit the diagnostic criteria, particularly according to other doctors who had declined the diagnosis of autism. (I have written before about such a doctor within the local autism community.)

These doctors are sometimes seen as heroes, particularly by the families who get financial assistance because of their diagnoses. They are just “working the system” to help out families. The problem being that an autistic child who gets their diagnosis from this person will then have their diagnosis doubted when other parents hear about who the diagnosis came from; even if their child is genuinely autistic. Because of the ongoing competition for resources – diagnosis is not the only point at which resources become available – these children can become targets of anger because they are diluting the limited pool of assistance.

Again, the doctors doing this – or even tempted to do this – should be arguing and fighting to change the system. They should not be reinforcing its unfairness and problems, by massaging truths and details so their clients can fit within it; leaving lesser “informed” families and families of future children, to continue to suffer their way through the unchanged unjust system.

I want to make it clear that I am not arguing these are the only reasons we might call others lucky for having more severe children, or argue over whose child is more severe, or use terminologies about severity of functionality, or get annoyed that certain people get help that we don’t. But it seems to me that the systems we operate within whilst competing for limited resources, go a significant way towards creating and furthering such competitive attitudes and unhelpful terminology.

One last important effect that I want to mention, that results from such competition for scarce resources, is what it does to our own views of our children and their views of themselves.

When we are forced to think about how severely our children are affected, and are “rewarded” with a share of the pie when we make our children appear significantly and severely affected, it necessarily impacts on how we in turn view our children. We are asked to talk and write about how bad their problems are, and a lot turns on how successfully we do that. We must focus of their problems, not their skills, in our applications for help. That makes sense, but it can make you start to see your child daily in terms of those severe challenges too. This doesn’t mean there should be a “what do you love about your child” section in such forms – there’s enough paperwork already thank you very much – but it does mean that its important to try to balance those necessarily negative focal points with celebrations and focusing on the positive in other areas of your parenting life.

Not only will our children be affected by how we as parents view them, they may also become directly aware of them being described over and over on endless forms as difficult and troubled children. We can try to protect them from this – fill out forms away from them and out of ear-reach if the details are being discussed (as they often are) – but that is not always possible. We also often underestimate what our autistic children can hear and understand, so we don’t always make the necessary effort to make sure they don’t get directly exposed to these views of who they are. Our children face enough problems without realising they are viewed and talked about in terms of their challenges and problems, not their skills and amazing selves. Self-esteem, confidence and a positive self-image, matter.

The competition for resources problem isn’t going away anytime soon, particularly for those of us who must rely on the publicly funded system to meet our children’s special needs. Whether the current system is set up in the best way to respond to those needs and allocate those resources, is a separate issue to the necessity of performing those tasks. At the least, I think it is extraordinarily important to be aware of how that competition impacts on our attitudes about our own and other autistic children, and of autism in general.

Monday, May 2, 2011

Autism, Siblings, and the Art of Unconditional Love: An Interview With Lindsey Nebeker

Lindsey Nebeker is one of our community's most visible activists, speaking out on topics ranging from autism and dating in Glamour magazine, to the need for more safety and support measures for individuals with autism at a recent Interagency Autism Coordinating Committee meeting. Lindsey was diagnosed with autism at the age of two, and began to speak around age four. She grew up in Tokyo, Japan with her younger brother James, who shares the same diagnosis but faces more challenges. She recently spoke with TPGA about her experience growing up as one of two siblings with autism.


Tell us a little bit about yourself. How old are you, where do you invest your greatest energies, and when did you first receive your autism diagnosis?

I am a pianist/songwriter, photographer, public speaker, and advocate currently residing in the Washington, DC metro area. As a woman in my late twenties, I have experienced a lot of opportunities and challenges in my life’s path. The inner core of my passions reside in music and art, which I use to express an accurate interpretation of my identity -- through my piano, my music compositions, and my photographic works. Also, in recent years, I have also invested my energies in contributing to the disability community.

I was born in Tokyo, Japan to a foreign banking executive father and a former English teacher mother. When I was between 12-18 months old, my parents discovered that not everything was “falling in place” for me at the typical rate of a young child. For one thing, I wasn’t talking. Another big thing my parents noticed was that I was unresponsive when they would try to call my name or interact with me. At first they suspected I might be deaf. They took me to a doctor to get my hearing tested and the results indicated that I did not have hearing issues.

Not long afterward, my mother ran across the 1983 magazine article So Near and Yet So Far: Living With Autism, and this was when she had an “a-ha moment” (as Oprah would call it).

In the early 1980s, evaluation services were scarce in Japan. My parents had to wait until their scheduled home leave to the United States to get me evaluated. (A home leave is a period of approved absence for employees living and working in a foreign country to re-visit their home country). By that time, I was two and a half years old.

I was first taken to a child psychologist for an evaluation. Although she was not an autism specialist, she did confirm that I was displaying many of the classic symptoms of autism. However, the psychologist (who once studied under Bruno Bettelheim) did not satisfy all my parents’ concerns as she went on to suggest the Refrigerator Mother theory. My mom did not buy that.

Fortunately, a friend referred my family to a well-respected autism specialist at the University of California, Los Angeles (UCLA). That was where I received an official diagnosis of autism, and eventually where my brother was taken to receive his own autism diagnosis.

My interest in advocacy and public speaking is somewhat based on my own experiences growing up with autism, but it’s more in behalf of my brother, James, and others who like him who have a greater need to be ensured their safety and their rights -- concepts that many of us who can speak up for ourselves take for granted.


What is the age difference between yourself and your brother James? Was he diagnosed with autism at an earlier or younger age than you were?

James and I are a little over two years apart. James was also born in Tokyo, and he also received his evaluation at UCLA.

Lindsey and James
James was, not surprisingly, diagnosed at an earlier age than I was. Because my parents had already experienced the process of picking up on early signs and the diagnosis process with me, they were able to pick up signs from my brother more quickly. Ironically, there was a brief period where he was more responsive and trying to engage with me, while I was the unresponsive one. My parents were actually more concerned about me than they were about James.

The child psychologist (the Bettelheim student) who had made the initial suggestion that I was displaying the classic signs of autism directed my parents’ attention to James (who was less than a year old at the time) and said, “See how you son is different? He appears engaged ... he is definitely normal.”

Within two to three years, James and I had “switched places.” As I began to learn how to speak, I was the one trying to engage with James, yet he appeared no longer interested.

What kind of relationship do you and James have, and how has it changed over time?

I have to admit that I wasn’t sure how to answer this, so I sought both of my parents (now divorced) for their wisdom. Both gave very similar responses: “You really didn’t have a relationship with your brother when you both were growing up. Both of you were absorbed in your own activities, played with different things, and had different social lives. You were both living in your own worlds.” Deep down inside, I was always aware of this ... but hearing it out loud to me sent chills down my spine.

James and I did walk on different life paths. We began in the same intervention programs and attended the same special education classes. But by kindergarten, that all changed when I transitioned to mainstream schooling. I went to regular grade school, earned a high school diploma, and went on to earn a B.A. degree. James remained in special education programs until he reached the maximum age to attend (age 22), followed by various sheltered workshops and adult day programs. I never thought that was fair, but at the time, my family didn’t know of a lot of resources and supports which accommodated inclusive activities for people with severe developmental disabilities.

I tried very hard to connect with my brother, and I am sure he tried very hard to connect with me, but we never seemed to “cross path.” My brother has always been a mystery to me. It’s odd to admit this considering we share the same diagnosis. To an extent, I understand what he is going through, but it only carries so far.

There were moments when my brother and I would share a laugh, a smile, a hug. They often were prompted, but they were there. Those cherished moments remain in my heart.

Do you know -- or know of -- many other sibling pairs like yourselves, with two people on very different parts of the spectrum?

I have known of and personally met sibling pairs who have ASD diagnoses. Some of these sibling pairs were twins. I also know of at least two families with five children who are all on the spectrum. Most of these sibling groups do lie on different parts of the spectrum, but not to the degree that James and I do. We are recognizably different at first glance. However, I am sure we are not the only sibling pair who is that way.

Do you think there is a genetic component to autism?

Personal experience can often affect a person in their thoughts and views, and it’s no different with me. Because of my family, and because of a number of other families we know, I feel very strongly that genetics play a role. Whether it is solely genetics or interacted with another factor I have no idea. It’s a very “touchy” subject, and I am cautious from making any claims that I know for certain.

How did your parents support your relationship with your brother, and his relationship with other people?

Throughout the years, James has always been surrounded by excellent support. He had excellent therapists, teachers, and sitters who loved and admired him. However, he had no friends.

Some thought he may not have cared about that, since he didn’t appear to care. Personally, I have never been able to tell what his innermost desires or feelings were. It’s odd to say that because I have autism myself. It attests to how autism is an extremely vast spectrum.

My parents were never able to tell whether their son really loved them or looked up to them as parents. In most cases, he would only come up to us when he wanted something (reaching for a jar of peanut butter, taking off an article of clothing, or a ride to McDonald’s) and had to depend on them to complete the task. After we gave him what he wanted, he would simply grab it and walk off.

Because of the lack of unprompted recognition, it was very difficult to sense he loved or appreciated my parents, and it was even more difficult to feel like he loved or appreciated me... since I couldn’t do as much for him as my parents could. We like to think that he felt that way, but perhaps has no idea how to communicate it to a level the rest of the world understands.

This was where my parents taught me one of the important lessons in life: the art of unconditional love. This means unconditionally loving someone without expecting that communicable love in return.

Unprompted recognition from James was rare, but treasured nonetheless. On a random occasion, he may come up to you, look at you in the eye for a few seconds, smile, and then walk away. We like to think those were moments when he perhaps was expressing his love and appreciation for us.

Have you been involved in your parents' planning for your brother's future needs?

Definitely. I always knew that I would have some kind of significant role as a sibling of a person with severe challenges. That role has shaped into different forms as I’ve matured. Initially, my primary role was to take care of James when my mom or my dad had to go on an errand or attend an event. As we approached our teens, and it became more likely that James was going to always need co-dependent living arrangements, I began to accept the possibility of having James come live with me after he exceeded the age limit to attend school. However, my parents got my brother on a waiting list for government funding to cover his housing options. A few years later, at the age of 16, James was granted that funding. At that point, my role changed to James’ potential legal guardian (my parents are currently his legal guardians). I receive copies of his monthly reports that are being sent to my parents so I am kept aware of what is going on.

Even though the state James resides in is responsible for his care, my parents remain his legal guardians until they die, at which point I will become his legal guardian. As a legal guardian, I will have the authority to assist James in making decisions that will be best for him and ensure that he will  live a full, productive life. I will have no out-of-pocket expenses for his care as long as the government continues his funding, but if for some reason his funding gets cut or his group home shuts down, I will have to find other residential placement. If I don’t succeed in finding living arrangements that work well for him, I will open up to the possibility of being his sole caretaker, and holding financial responsibility of both our living expenses if he does not receive the accommodations and supports to gain employment.

Currently, I am working out arrangements to acquire communication devices for James to try out again (years ago we tested AAC devices for him without success), and seek the funding required to hire one-on-one assistance to work with him.

What is one thing that being James's sister has taught you, one thing you'd like other people to know?

I am continuing to learn an invaluable lesson in the humanistic nature of caring for one another. It’s a part of human nature that many of us forget (even myself). As an autistic individual, I have developed a tendency to be self-centered, and to feel like the world has to revolve around me. James keeps me from falling too deep into my self-centered “trance.”

Growing up with the profound differences between my brother and myself in characteristics, strengths and challenges also has allowed me to be open-minded to the differences of the communities, cultures and belief systems that make up our world. This includes the difference in opinions expressed by the ASD community. It does not mean I agree with everything, and (like every person) I have my own beliefs and personal opinions, but I try and listen to all sides of the story.

I have also learned to practice the art of mindfulness. Through my first four years of being nonverbal, I have developed full conviction that those who do not speak understand more than we may realize. I am extremely mindful of speaking to a person rather than at a person. I get highly uncomfortable in the presence of gossip, and whenever I do speak about a person I try my best to practice respect -- even when addressing a concern or criticism. If James appears to be completely disengaged while we’re in the same room, I always talk with people as if he is fully present in the conversation. When we sit together in a circle to talk about a person, even if that person doesn’t appear engaged and doesn’t sit with us, let us be mindful and speak as if that person is sitting in our circle, fully present and participating.

I can say things like “James has taught me patience, unconditional love, yada yada.” But it was my parents and my teachers who taught me those principles. I do not see my brother as a teaching tool; I see him as a person who was learning alongside me, at our own individual pace. I cannot deny that our relationship was different from most sibling relationships, and I cannot deny it was a difficult relationship, and I cannot deny that I wished we had a more connected relationship. However, I have no idea what it is like to not grow up with someone like James ... it is the only sibling experience I know. So, I choose not to stress on comparing our relationship to the brother-sister relationship that could have been. I love him regardless.

How do you feel about having a loved one in a residential placement? Was it a difficult decision for your parents?

I have a copy of an old family home video with scenes from my brother’s first Birthday party, which I rarely pull out and watch. Recently, I re-watched it, and I remembered why I don’t watch it often. From beginning to end, I wept incessantly. Seeing the moving images of a precious, fiery, red-haired, twinkling eyed little boy full of laughs and smiles. “I’m so sorry, James, that we had to give you up ... I’m so sorry that we have caused our family to fall apart ... I’m so sorry that I have not been able to be there for you.”

When a member of your family leaves your home to a residential placement, there is an indefinite period of guilt that the family members go through, particularly the parents. I periodically have heart-to-heart conversations with both my mom and my dad about the feelings of guilt that go behind that. “Believe me, it was extremely difficult,” my dad said, “Sometimes I feel like I have abandoned my own son, and it’s excruciating.”

As a parent, you don’t want to feel like you are abandoning your child, and as a sibling, you don’t want to feel like you are abandoning your brother or sister. I admit, it is hard.

Some of my friends are not even aware I have a brother, since James and I are hardly together and he doesn’t live at home. Very few have met him. During my childhood and teen years, I had very few people who wanted to come over to our house. Every time a friend would come over, I had to explain to him or her why James didn't talk, why he displayed different behaviors, the possibility of him attacking us during his meltdowns, and the possibility of him suddenly appearing without his clothes on (all which has happened).

My parents never desired to send him away, and they tried as long as they could to keep him at home. As helpful as intervention was in developing his basic life skills, he has had a long history of violent behavior during his meltdowns. When he was a little boy, that wasn’t as difficult to handle. Once he became a teenager and developed more strength, the outbursts became increasingly dangerous. It was difficult to predict when they would occur. We often wouldn’t know when he was frustrated or upset until he’d start punching a hold through the wall, ramming his head through a window, or attacking anyone that was around him. Not only was he injuring other people, he was injuring himself -- and that was an extreme concern.

Whenever we were in the car, it’d get especially frightening. If we sensed James was going to attack the person who was driving (a parent or myself), the remaining passengers would have to make sure he didn’t grab hold of the driver and lose control of the wheel.

This was not easy for me to accept when I was growing up with James. I often felt injustice whenever he would hurt or attack me when I had done nothing to him.

My mother was probably the most affected by all this. I remember as a high school student being asked to take photos of her bruises, black eyes, and bite marks so she could send them to the state to plead they bump him up the waiting list and provide funding for the services he desperately needed. At one point, my mother was on the verge of picking up the phone and dialing 911.

There is nobody to blame for this. I completely understood why James would handle his emotions this way. As a person who has never been able to speak, has not succeeded in utilizing an AAC device, and knows a maximum of 10 sign language symbols, it is nearly impossible for anyone to understand what he is trying to communicate to us. You could always tell he wanted to communicate, but we often had to guess what he was trying to let us know. We would learn what would make him frustrated or upset, but as far as expressing an ailment or health concern, it could take a while to figure out.

A lot of tears were shed -- from all sides. My parents and I really wanted to have my brother around. After all, James is a part of our family, and when a family is torn apart, every family member’s life is affected. It’s physically and emotionally difficult for everyone, including the individual in question.

There wasn’t really any other option. Our own funds were decreasing, and we were gradually losing the strength and ability to care for him.

Does that mean he has become a hopeless case? Does than mean all hope is lost? It also depends on how one defines hope. Hope is only lost when you decide all hope is lost. We are often trapped in a conformity of societal standards on the definition of hope, the definition of achievement, and the definition of success.

My parents and I have given up setting up unrealistic expectations. It does not mean my brother will never speak, but we have let go of expecting him to speak. Our goal, simply, is to make sure he is being heard.

Being able to communicate and feel like you are being heard does play a role in achieving happiness, so I still am working with his residential program to figure out what communication methods James can try out, and secure the staff required to help him navigate the devices. We are still on the very beginning stages of this process, but hopefully we will find a communication method for my brother that works.

As long as he is happy, that’s all that matters.

Friday, December 17, 2010

I'm Getting a Vibe

Sarah Schneider
www.kitaiskasandwich.com

Today’s evaluation, the second this week, requires us to wake up before God and Jesus to pack up the kids and drive across town in rush-hour traffic. I am missing yet another morning of work. Nobody is sleeping well these days, but last night was particularly bad. The kids have colds, I got less than two hours of sleep, and I am sullen and mean. We are running late. My husband makes a wrong turn, and then another, and then passes the clinic and has to double back. I snap at him and immediately feel ashamed, apologize, and try to smooth it over. The kids pick up on my bad mood and start wailing.

In the last 90 days, M has been evaluated by 20 or 30 different Special Needs Professionals. All of them agree that M has autism, and would benefit from speech therapy, occupational therapy, sensory integration therapy, and ABA. As of this writing, not a single one of the 15 evaluations has resulted in the actual delivery of services to my son.

Today, we are taken to a room with a speech/language pathologist, an occupational therapist, a developmental pediatric specialist, an intern, and a child psychologist. Counting our family, a total of seven adults and two kids. There are three adult-size chairs set up at a table, and two toddler-sized chairs next to a plastic castle in the corner. The adult chairs are all taken. I stand for a while, then squat, then finally sit uncomfortably in one of the toddler chairs so I can nurse L.

I am exhausted and L is sick and cranky, and he squirms and kicks and bites as he nurses. As I try to maneuver him into position in the tiny plastic chair, I roll my eyes and sigh audibly.

The psychologist pipes up for the first time since we walked in the room over an hour ago. “Um, excuse me. I just have to ask. What has been your experience with [our HMO]? I mean, have you been happy with your experience?”

I am confused by her question. “You mean, since M was born?”

“No, in this evaluation process. Because, um -- as a psychologist? I’m really getting a vibe from you. So -- Are you guys just normally -- mellow people? Or do you not want to be here?”

My husband says, deadpan, “I’ve been called mellow before.”

I am still stuck on “do you not want to be here?”

Tuesday, October 12, 2010

My Child and Me – Keeping Everyone Honest (Or, the Therapists We've Fired)

Jennifer Minnelli, M.S., CCC-SLP

When your child first gets diagnosed with a developmental disorder, you, as a parent, are in a very vulnerable place. Regardless of your area of professional expertise, it's almost as if you start over again, as a beginner. A beginner to parenting, and a beginner to this new world of diagnoses, specialists, medications, teacher opinions, and therapists.

When we started down the road of diagnosis for my quirky oldest child, I was reluctant. It was hard for me to submit to other peoples' opinions, when I felt I knew exactly what was going on with her and how it should be treated.

Also, I felt, I knew the dark under-belly of the world of allied health professions. Several years out in my career, I had already worked in a variety of settings, from public school to inpatient hospital, and everything in between. I had worked for some outpatient facilities that I had to leave, after a few months, in order to uphold my profession's code of ethics. I learned quickly that earning a master's degree in one of the disciplines, like Speech Pathology, and passing the professional exams was only the beginning. A person can spend the rest of their career continuing to grow and learn in one or two areas of expertise, or can be a warm body somewhere, and basically make the same amount of money, and have the same benefits. At times, I observed or came to know about circumstances that either pushed the ethical boundaries, like making the same recommendations for every child, regardless of their needs, or flat-out violated them, like billing for services that never took place. To be fair, I also encountered amazing people who did amazing work, and I pride myself on striving to be one of those clinicians.

Still, when my child was three and the preschool teacher started making noises about a developmental assessment at the local early intervention center, I said no. Reason being, I knew the speech lady who heads up the evaluations, and I knew that she always recommends augmentative communication devices (AAC, www.abilityhub.com/aac/aac-devices.htm), because that's her thing. And while I'm glad that she has an area of expertise, every piece of wood does not need a nail, and every child, especially my hyperlexic, highly verbal three year old, does not need AAC I thought I could do a better job myself, creating good peer-matches for my child and scheduling play dates in which she could practice her social skills while doing physical activities -- like monkey bars and digging in sand -- that gave her body the input it needed to help sustain appropriate social interactions.

But as the years have continued to pass, we have encountered lots of therapists. Some good, and some not-so-good. Here are my reflections on why some people didn't work out very well for my child, and advice on what to look out for. I am using pseudonyms to protect people's pride and privacy.

Never choose a therapist who is learning a new area of expertise, and admits it to you. The therapist you hire should know at least as much as you do, about the population they purport to serve, and needs of your child. When my child was four-and-a-half, I thought it would be good for her to have a play therapist, who also had some training in narrative skill development. I found a therapist, we'll call her Heather, who had been practicing Speech Pathology for years, but was new to the art of Floor Time™ (http://www.icdl.com/dirFloortime/WhatisFloortime.shtml), and was taking a course in RDI™ http://autism.about.com/od/treatmentoptions/a/RDI.htm). She agreed to provide play therapy with an RDI and Floortime approach to my child for a reduced rate, because she was learning to practice something new. 

Heather would come to our house, so I had a pretty good idea about what was going on. She focused the first few sessions on developing the therapeutic relationship by playing simple games like peekaboo and hide-n-seek, and at first I thought this was OK. But then my child, with the repetitive learning style, came to expect that that was what they would always do together, and Heather did not have the skills to extend beyond those games, to activities that would build narrative skills and perspective-taking. Plus, she had the nerve to call me on the phone, and tell me that my child was far more severe on the spectrum than I had thought, and that peekaboo was a necessary part of the developmental continuum for my child. As if I hadn't spent the first two years of my child's life playing peekaboo with her. See ya!

Just because the school system offers you free services, it doesn't mean that they are the right services for your child. When the public schools evaluated my child, they came up with the murky diagnosis of borderline high-functioning Asperger's, with fine motor delays and sensory processing disorder. They could not give her a language or problem-solving test that she could not sail through because of her high language and problem-solving ability. And yet, they wanted her to qualify so that she could get I.E.P. Services if needed, once kindergarten started. The occupational therapist (OT) who evaluated her said that my child would benefit from 30-45 minutes per week of occupational therapy, in a sensory integration (SI) environment. However, the department's lead OT said that the schools could not offer 1:1 therapy because that was not the system's service delivery model. So, my child was funneled into “group,” which was a hodgepodge multi-disciplinary group with several children and therapists that functioned like a mini-preschool. 

We went for a few sessions, until I figured out that there was no sensory integration going on, the therapists did not know what SI is, and there were several children in the group who were modeling behaviors that I did not want my little parrot to start mimicking. And then the therapists complained to me about my child's distracted behavior in an almost-venting fashion. Did they do this because we are colleagues and they thought I could take it?? How could this be an adaptive, therapeutic setting for my child? That was that. We did find a fabulous SI clinic (www.aplacetogrowtherapy.com) and my child still enjoys going there to this day.

We owe it to ourselves and everyone else to make sure that the schools know what to do with no-man's-land children like mine. I am fortunate to be able to pay out of pocket for SI services, but not everyone is able to, and those services should be available and the schools should know how to provide them!

Don't fall for snake-oil treatments. If it seems too good to be true, it probably is. We have done many alternative healing therapies: Reiki, craniosacral, acupressure, special diets, etc., and I would say that the best thing that has come out of them is that my child feels cared for by many loving and interested people. There has been no cure to date, and, at this point, I'm past wanting a cure for my child. 

We went to a wonderful and caring person who is an allied health professional, and is also trained in Craniosacral therapy. It was good for a short stint, but then, I got really fatigued by this person. Even though she loves my child and did a great job, it felt like she needed me to tell her how dramatically improved my child was in all of these areas, so that she could keep feeling good about herself as a therapist and a healer. And I just can't get caught up in helping her maintain her self-deception. 

We have good days, we have bad days. Some days we eat the gluten-filled pizza crust. Some days I forget to give my child the Dr. Bach's Flowers drops and the cod liver oil. I can't get pulled into this trap of thinking that if only I did these certain things, my child will magically be neurotypical. And I don't want to be blamed by a therapist because they could not fix my kid.

Trust your instincts. We tried one session with a speech pathologist. She was good, and qualified in the pediatric population. However, she spent the hour asking my child questions, making her sit down, and directing the session. Then, after it was over, she asked me, “What are your child's play skills like? Or does she even play?” Do you hear something? That's the sound of the door closing. Time for me to go out and play with my child.

I used to be a door mat. I let boyfriends walk all over me in my twenties, before I found my kind and wonderful husband. But now that I have a child on the Autism spectrum, I am a worthy opponent for anyone: teacher, doctor, specialist, school administrator, politician, neurotypical child on the playground. We owe it to our children to expect the best, and to find the best specialists for them. Specialists owe it to everyone else to be honest about their areas of expertise, to ask for more training, or go find it and pay for it themselves. And, finally, to admit when something is not in your area of expertise, and to refer the parent on to another expert. Here are three perfectly acceptable answers to parents:
  • “Yes, I know how to treat children with fine motor delays. I have twelve years experience treating kids in a clinic setting. Here are some references.”
  • “Yes, I have some experience with social thinking deficits and am attending a conference in two weeks to learn more about them. Tell me more about your goals for your child and his areas of need.”
  • “I'm sorry, but the only experience I have with that population dates back to my graduate school years; however, I can refer you to Susie Q., who specializes in children like you are describing.”
Every discipline has a code of ethics. Here's mine, from the American Speech-Language-Hearing Association: www.asha.org/docs/html/ET2010-00309.html. Lately, I've been thinking about the Hippocratic Oath, “Do no harm.” I recognize with all of the issues in medicine, that may be the best we can hope for. What could be a good oath for professionals like myself? I am really interested in hearing others' responses to this.

In the end, when you are working in a profession that touches children and families, it's not enough to say that you love children and that you want to work with children. Children and their issues are but 1 part of the equation. When you work with children, you have to know how to talk to the adults that are their parents, you have to acknowledge that there may be a grief process going on, and have some understanding of the family system. You have to speak with other disciplines, and integrate their ideas and opinions. Finally, you have to realize that it's not about you, it's about the children and the families that you are serving.

Wednesday, July 14, 2010

Rotten Food, Lousy Service: Dodge the Restaurant Mentality to Get Your Kids the Services They Need

Carol Ann Greenburg
Brooklyn Special Needs Consulting, www.bklynsnc.com

Sometimes I feel like getting services for my autistic son is like trying to dine at the world’s worst restaurant. You can’t afford the best eatery in the city, who could? You’re still really hungry so you walk into some local dive and the wait staff, whose entire job it is to feed you, is standing around staring blankly at the many obvious health-code violations. They’re clearly offended by the interruption when you ask for a menu. You’re the one who is hungry after all, why can’t you come in knowing what you plan to eat? Finally someone ambles over with a menu, drops it on your table like they’re doing you a favor, and you realize there’s nothing even remotely edible on it. Specials, Substitutions? Forget about it! After you wait an unholy amount of time, someone brings you the wrong order. Cold. You complain, and in their very first efficient move of the day, the staff coalesces to kick you out unfed because they reserve the right to deny service to anyone for any reason.

Our kids’ minds and spirits need appropriate, completely individualized services just as urgently as their bodies need food. A bounty of services should lie at their sweet little fingertips. No family in our position should have to wait for, fight for, or make do with inappropriate services, because a child needs something that’s “not on the menu.” Unfortunately, however, the truism that Life-Is-Unfair is even truer for us, so we must use a combination of persistence and creativity to score resources that should be, but aren’t, easy to access.

So let’s start with the P words, prioritizing and persistence. Draw a line down the middle of a piece of paper and write “Needs” at the head of one column and “Wants” at the head of the other. My seven-year-old singing, dancing, sports-loving attention magnet is severely language delayed. So while music therapy and swimming lessons are of great benefit to him, speech therapy is at the top of our Needs list. That doesn’t mean our family should forget all about music therapy or swimming, but when push comes to shove, its speech first, music second. Assuming we’re battling with the folks who are supposed to pay for the service, which we unfortunately often are, it’s always easier to fight on a single front than on multiple fronts.

Now that we’ve figured out the top priority, we have to tap the most logical source of funding. When it comes to speech therapy, an obviously academic need, we will naturally go first to the board of education. By law, all kids are entitled to FAPE (a free appropriate public education), so if we get lucky, the district will immediately offer all the speech that is required. This does happen sometimes. No one gets into the field of special ed to make their first million by time they’re twenty-five. Many school staff and district personnel care deeply about your child’s education, but their departments are not well funded, so they have to make hard decisions about who gets what.

This is where the other P word comes in. Persistence. (P is also for politeness and patience.) Persistence does not entail your screaming over the phone at one bureaucrat after another who would like to help, but their boss’s boss just wrote a memo about the need for tighter purse strings. Persistence is about writing detailed polite letters to the leader of the IEP team, letters that simultaneously acknowledge their expertise and your full membership in said IEP team. Persistence means following up with polite phone calls, during which you inquire if they might need any more information from you before you can all reach an agreement you can live with. Persistence means taking detailed notes on every single conversation, with as many exact quotes as you can write down. If there are raised voices and unhelpful attitudes, they’d better not be yours, but they’d better be objectively and accurately documented by you. In the end, that strategy gives you the best chance of getting your child’s needs met.

Now what about their wants? Or your wants? Or your other children’s wants? This is where creativity comes in. As I mentioned before, my son loves music therapy and we want him to have it. He’s an only child, so we don’t have to worry about other kids’ soccer games, or cheerleading practices, which I hear tell are inevitably in the opposite direction. Music therapy isn’t cheap, but with help from generous relatives we’ve managed to pay for it. The conservatory is a fairly short drive and we have two cars, so in the end we can fulfill that particular wish. Now, I’m sure he’d also enjoy skiing in the alps, but that would be a little more than our family can handle, in terms of time money and energy. In a perfect world, our limitless wealth would provide for his every desire and he’d be chauffeured to each delightful treat while we sat eating, delicious but calorie-free bon-bons on the couch. (If anyone knows of such a perfect world, by the way, please email me the address.) In this world however, the choices we make for our autistic child really have to work for the whole family, which requires some creativity.

Funding is the first issue you have to approach with an open mind. It can become almost automatic to hold out your hand to the Board of Ed for any service, because so much of what you want for your child has educational implications, direct or indirect. If, however, the service is more of a Want than an absolute Need, and particularly if it can be interpreted as, say, more recreational than immediately, educational, think of other sources before you go to your local school district. I could reasonably argue that my son’s music therapy has an impact on his education, for example, but the district could counter that music therapy is an extra curricular activity more appropriately covered by Medicaid, or a corporate charity, or a local nonprofit organization. Casting a wide net financially makes everyone happier - you're more likely to get the money you need from the school district because it’s eternally strapped for cash, and from the corporation, foundation or other nonprofit, because they need to demonstrate that someone needs their services to justify their next grant application.

The next challenge to your creativity comes in the form of a phrase quoted reverently, and justifiably, by any decent disability rights advocate. “Person first thinking” is vital here. All autistic people, my son and myself included, have what the neurotypical world calls “obsessions” and what we autistic folk often refer to as “special interests.” When I was 12, I started teaching myself Japanese. That may not sound so unusual to today’s parents, but back then, most Americans had never heard of Manga or Anime, there was no such thing as a Japanese language class in any East Coast middle or high school. And services? Please. There was no working Asperger’s diagnosis back in seventies, much less any services geared towards verbal people on the spectrum like me. Luckily I had good parents who encouraged my interests, however odd, and what I like to refer to as not so much the symptom of, but the Autistic Superpower of perseveration. Even if we had the internet back then, I’m quite convinced no Google search for East Asian Language Instruction for Autistic Preteens would have yielded useful resources. So I started learning words from the one English/Japanese dictionary I could find, stalking and practicing on commuter trains filled with unsuspecting Japanese business people, and adjusting the antenna of my ancient black-and-white TV to find obscure chanels where people spoke Japanese. An unusual approach to be sure, but for outside-the-box thinking it’s best to go to someone so autistic they can’t even see the box.

Back to the present, to My Son the Jock, who unlike me had an early and clear diagnosis, good services, and at least so far, less esoteric special interests. Thank goodness most of us now have some sort of access to the internet, so it’s pretty easy to look up his sport du jour. My husband noticed his fascination with TV shows about obstacle courses. Forgetting myself and putting disability first, I looked under “Obstacle courses, autistic children.” Luck smiled upon me and I actually did find something. In Colorado. We live in Brooklyn, NY. He has a twelve-month school year and the chances of finding the one obstacle course clinic specifically designed for autistic children that fit into his school schedule ... well, I don’t have to tell you how successful that effort wasn’t. I’m sure you’ve been there too.

Putting him, his individual interests and personality first, was not only more respectful, it was more useful. Just looking under “Obstacle Course, Kids” I found a few. They weren’t right around the corner, but New Jersey is a lot closer to us than Colorado. So say we do decide to pursue this further in our family’s copious spare time. When you think about it, it actually doesn’t take a gargantuan effort for me to email, or call whomever is in charge of the program explaining that our child, who most importantly loves obstacle courses and by the way also happens to be autistic, might like to participate.

I know even five years ago, the program coordinator might have muttered something not completely intelligible, but clearly negative. We live in a different and I think better world now though, thanks to greater autism awareness. The rising rate of autism has created an atmosphere in which geek is so chic, it’s rare to meet anyone who doesn’t at least know someone who knows someone with a kid on the spectrum. A world that I believe is gradually evolving into a less fearful, more accommodating place for all human beings.

I regret that I couldn’t get a diagnosis for myself until I was 44, and that I personally never got the kind of services I can now access for my son and children like him. But I also rejoice that he has been diagnosed in time to get those services when they can most help him. Like any mother, I worry about his future, but on my better days, I believe the world is his oyster. Great. So what's next on his list, pearl diving?