Addressing the Mystery of Self-Injury: A Parent’s Struggle

The Unexpected Onset of Unusual Behavior

It was a regular early morning at 5:23 AM on February 1, 2009, when an unexpected occurrence disrupted the peace. Jamie, a young individual with health conditions, began displaying self-injurious behavior. Unfortunately, this was accompanied by abnormal seizures, a previously unseen phenomenon. An attempt to control the seizures was made by administering 10 milligrams of Diazepam, a medication known for its anticonvulsant properties. However, this did little to halt the self-inflicted harm.

Jamie appeared to be focusing his attacks on his ear, an area previously damaged in a group home. The motivation behind this behavior was unclear. What was more baffling was the abrupt onset of this self-injurious conduct after almost five days without any such activity.

Changes in Medication and Behavior

Jamie had recently been weaned off Depakote, a drug used to treat seizures, and had started on Lamictal, along with Ativan, as required. The latter was occasionally used for attacks and to manage self-abusive behavior. On the night of the incident, Jamie was given Diazepam as a fast-acting rectal gel since waiting for Ativan to take effect wasn’t an option. As a result, his behavior was erratic, characterized by a wild look in his eyes, starkly contrasting his usual demeanor of laughter and contentment.

Uncertain Health Status and Need for Medical Investigation

Jamie had been mysteriously losing about 25 pounds over the past four months. A CT scan of his abdomen revealed only fecal impaction, which was addressed subsequently. Repeated attempts had been made to persuade doctors to conduct further tests. One such procedure was an endoscopy, which unfortunately lasted only 30 seconds due to Jamie’s reaction to the sedative and thus did not provide any substantial insights.

Despite the lack of clear medical evidence, Jamie was suspected to have undiagnosed gastrointestinal issues. However, medical professionals seemed to dismiss this theory. An alternative suggestion was to conduct a PET scan to investigate possible brain anomalies.

The Struggle with Doctors and Psychotropic Medication

Over 17 years, numerous consultations with medical professionals had yielded little more than prescriptions for various psychotropic drugs. Jamie had been treated with Risperdal, Prozac, and other medications like Naltrexone and Clonidine, none of which had effectively curbed his self-abusive behavior. This resistance to the drug suggested that Jamie might be behaviorally fragile, where even the slightest discomfort could trigger self-injury.

The Challenge of Restraints and Search for Answers

Restraints were not entirely effective as a means to control self-abusive behavior. In addition to the physical strain they put on Jamie, they also presented a constant cycle of restraint, self-injury upon release, and condition again. The need of the hour was not to control the symptoms but to understand the root cause of such behavior. The change in his countenance indicated that there was more to his actions than what met the eye, a mystery that required diligent medical investigation to solve.

“The transition to adulthood can be a challenging time for anyone, but it can be especially difficult for people with autism,” said Mark Roithmayr, president and CEO of Autism Speaks. “Our new transition toolkit is designed to provide families and individuals with the information and resources they need to make the transition to adulthood as smooth as possible.”

The toolkit is divided into four sections:

• Self-Advocacy: This section provides information on how to develop self-advocacy skills, such as how to communicate your needs and wants, how to set goals, and how to advocate for yourself in different settings.
• Independent Living: This section provides information on how to develop independent living skills, such as how to cook, clean, do laundry, and manage money.
• Employment: This section provides information on how to find and keep a job, how to develop job skills, and how to succeed in the workplace.
• Housing: This section provides information on different housing options for people with autism, such as independent living, group homes, and supported living arrangements.

The toolkit also includes a section on resources, which provides a list of organizations and websites that can provide additional information and support.

The transition toolkit is a valuable resource for families and individuals with autism. It provides information and resources to help make the transition to adulthood a smoother and more successful experience.

In addition to the transition toolkit, Autism Speaks offers a variety of other resources and support services for people with autism and their families. These resources include:

• The Autism Speaks Autism Treatment Network: This network of over 100 clinics provides comprehensive, evidence-based treatment for autism.
• The Autism Speaks Autism Response Team: This team of trained professionals provides free, confidential support to families affected by autism.
• The Autism Speaks Autism Resource Center: This website provides a wealth of information and resources on autism, including articles, videos, and fact sheets.

Autism Speaks is committed to helping people with autism live full and productive lives. The transition toolkit is just one of the many ways that Autism Speaks works to make a difference in the lives of people with autism and their families.

Here are some additional tips for helping people with autism transition to adulthood:

• Start planning early. Transitioning to adulthood can take several years, so it’s essential to start planning early. Talk to your child’s doctor, therapist, and other professionals.
• Get involved in your child’s education. Make sure your child is getting the support they need in school. This may include special education services, such as speech therapy, occupational therapy, or behavior therapy.
• Help your child develop social skills. Social skills are essential for success in adulthood. Encourage your child to participate in activities that will help them develop social skills, such as sports, clubs, or volunteer work.
• Help your child develop independent living skills. As your child ages, help them learn how to do things for themselves, such as cooking, cleaning, and managing money.
• Talk to your child about their future. Talk to your child about their dreams and goals for the future. Help them develop a plan to achieve their goals.

The transition to adulthood can be a challenging time, but it can also be a time of great opportunity. With planning and support, people with autism can live full and productive lives.

Download the Transition Tool Kit

Advocating for autism is a powerful tool for raising awareness, promoting acceptance, and implementing inclusive policies for individuals with Autism Spectrum Disorder (ASD). It involves empowering those on the spectrum, supporting their rights, and striving to create a society where they can thrive. This piece delves into the significance of autism advocacy, its impact, and how you can participate. Advocacy for autism is essential in increasing awareness and promoting understanding of ASD. By amplifying the voices of people on the spectrum, we can ensure that their needs and concerns are heard and addressed.

Understanding Autism Spectrum Disorder (ASD)

Autism Spectrum Disorder is a type of developmental disorder that has an impact on communication and behavior. Each person on the spectrum has their own unique strengths and challenges. Although autism is becoming more well-known, there are still many misunderstandings that people who advocate for those with autism are trying to address. Autism Spectrum Disorder is a complex neurodevelopmental condition that influences how individuals interact with the world around them. Difficulties in social interaction, communication, and repetitive behavior patterns characterize it. Those with autism have various abilities and can excel in certain areas while struggling in others. Although autism is often diagnosed in childhood, it is a lifelong condition that can greatly impact a person’s daily life. Early diagnosis and intervention are vital in helping those with autism reach their full potential and live fulfilling lives. Additionally, promoting inclusivity and understanding can help break down barriers and support those on the autism spectrum. We can dispel misunderstandings and create a more inclusive society through education and awareness.

The Role of Autism Advocacy

Advocating for autism is crucial in promoting a comprehensive comprehension, acceptance, and fundamental rights of individuals with autism. Devoted advocates tirelessly work to challenge stereotypes, advocate for inclusive policies, and acquire essential resources for people and families affected by autism. Their unwavering dedication contributes to creating a more inclusive and supportive society.

The Impact of Advocacy on Policies and Special Education

Due to the efforts of autism advocates, policies and laws surrounding special education have been greatly influenced. These advocates have played a crucial role in creating and implementing policies that ensure inclusive education and meet the specific needs of students with autism. They have also worked hard to raise awareness and understanding of autism, helping to create a more accepting and inclusive society. Additionally, their tireless efforts have resulted in increased funding for research, early intervention services, and support networks for individuals and families affected by autism. Through their collaboration with policymakers and other stakeholders, these advocates have helped to create a brighter future for those with autism, enabling them to achieve their full potential and lead happy and fulfilling lives.

Autism Awareness and Acceptance

Autism advocacy goes beyond awareness and strives for acceptance. Acceptance means acknowledging, respecting, and valuing the diversity of individuals with autism in our communities. It also means providing the necessary support and resources for them to thrive and promoting inclusion so they can fully participate in society. By fostering acceptance, we create a world where people with autism are accepted for who they are, and their unique perspectives and contributions are recognized and celebrated. By continuing to advocate for autism, we can build a more inclusive and accepting society for individuals with autism and their families.

How You Can Get Involved in Autism Advocacy

There are numerous ways to become engaged in autism advocacy. One can consider joining or contributing to autism organizations, actively participating in campaigns that promote awareness and acceptance, or advocating for inclusive policies within local schools and communities. It’s important to remember that every single voice makes a significant impact. By doubling the size of the original text, we can emphasize the diverse range of opportunities available to individuals interested in promoting autism advocacy efforts.

Conclusion:

Autism advocacy is a powerful force for change, driving awareness, acceptance, and inclusive policies for those with autism. Whether you’re a parent, educator, health professional, or someone who wants to make a difference, your voice can contribute to this crucial cause. Through advocacy, we can work towards a world where individuals with autism are fully included and valued.

Experience the incredible moments that come with living with autism and gain a deeper understanding of the complex world of epilepsy and self-injury. Discover hope, love, and support through resources like the Family Christian Bookstore and community connections. Educational videos on YouTube offer valuable insight into what it’s really like to live with profound to severe autism. Although there may be difficult days, there are also moments of joy and optimism that keep families moving forward.

Thousands of caregivers use iPrompts® to provide visual support for those with language and behavioral challenges, including autism and ADD/ADHD. Acclaimed in news stories around the world, iPrompts® also works great with typical kids!

At $49.99, iPrompts® is hundreds of dollars less expensive than DynaVox Mayer-Johnson’s Boardmaker® v.6. 10% of all iPrompts® sales benefit Autism Speaks, the nation’s largest autism science and advocacy organization. Original site and app download