What is neurodivergence?
Neurodivergent means in layman’s terms that a person’s brain works differently, including their processing of sensory input and output. Neurodivergent children may have conditions such as autism spectrum disorder, sensory processing disorders, apraxia, dyslexia, bipolar disorder, and attention deficient disorder. Neurodivergent people also tend to be visual thinkers and innovators, and they contribute significantly to our society.
Scientist, autism advocate, and best-selling author Temple Grandin wrote many books on her life experience as a neurodivergent person, which include stories about how challenging traditional school and day-to-day life was for her.9 Grandin emphasized the need for children to have hands-on learning experiences: “We need to be getting kids out working on real things. We got water systems falling apart, electrical wires falling out and causing fires. There’s all kinds of practical problems we need to be solving and visual thinkers are really good at that.”10
The guardian ad litem practice is unique and complex because it requires the study of child development issues. This includes understanding disability, integrating the diverse needs of a population who represent a wide spectrum, and competently representing all children, including those who require the greatest services and supports — the profoundly autistic child — while giving all parties a voice in the court system.
Communication and behavioral needs
Approximately 4% of all children are autistic.11 The American Psychiatric Association’s “Diagnostic and Statistical Manual of Mental Disorders” diagnostic criteria for autism spectrum disorder includes, but is not limited to:
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal/nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, [and/or] need to take same route or eat same food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, [and/or] excessively circumscribed or perseverative interest).
4. Hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, [and/or] visual fascination with lights or movement).12
Children who are diagnosed as autistic can have deficiencies recognizing social cues and engage in repetitive and atypical behaviors, often resulting in increased “problem behavioral incidents” at school and home. However, guardians ad litem should view behavior as a form of communication — especially for a child with limited ability to speak or write. Autism spectrum disorder may range from “level-one” verbal children who need limited accommodations to a child with profound autism who needs substantial care, is verbally limited, has an IQ of less than 50, has substantial developmental delays, and has sensory input/output issues.13 It is common for a nonverbal child to communicate emotions and needs with body gestures, spinning, jumping, grabbing, or pointing. All professionals working with the child should be familiar with the child’s diagnosis and how the disability presents or “manifests.”
Additionally, neurodivergent children often need specialized accommodations for both perceptive and receptive communication deficiencies. These accommodations could include visual schedules, visual communication devices, and pictures to assist in comprehension. Many children who are verbally limited or nonverbal will require photo cards and electronic visual communication devices such as an augmentative and alternative communication device.14 Verbally limited or nonverbal children should have these tools with them at all times including during appointments, behavioral incidents, and placement in a secluded or quiet room. These accommodations help meet the needs of a child who struggles to process and comprehend spoken and written language.15
Several neurodivergent people have written books about their life experiences living on the spectrum that may help guardians ad litem. Thirteen-year-old Naoki Higashida wrote about how he thinks, feels, perceives, and responds in “The Reason I Jump.”16 Antonio Prokup, a life-long resident of Macon County, also wrote an autobiography, “Slightly Blurred, Yet Undeniably Real,”17 about growing up in rural Missouri as an individual with autism.18
Best practices for guardians ad litem
Because of communication differences and behavioral challenges neurodivergent children experience, guardians ad litem should educate themselves on how to best communicate with their clients so they can assist children with securing needed accommodations, technology, and related services. They should also be versed on best practices of behavior management for neurodivergent children. This includes a basic understanding of special education law, services children are entitled to under the Individuals with Disabilities Act, and legal protections under the Americans with Disabilities Act. If a child has behavioral issues at school, the guardian ad litem should review records and attend manifestation meetings which may result in a formal or informal suspension or even a reduced school day for the child. Participants at a manifestation meeting discuss questions such as whether the child’s behavior is a “manifestation” of the child’s disability, a result of a failure to implement the child’s Individualized Education Program, or if additional educational services are necessary to provide a free appropriate public education such as appropriate levels of staffing or changes in placement.
Guardians ad litem can advocate for a student to receive an IEP, Section 504 plan, or behavior intervention plan prepared by a licensed board-certified behavioral analyst. Used in an educational or home setting, a BCBA provides therapy, data, accommodations, and interventions for behavioral-related challenges for people with developmental disabilities or behavioral disorders.19 IEPs may include education services, behavioral plans, transportation, necessary accommodations, and review of any school records.
Guardians ad litem should also advocate for additional services for a broad range of concerns including but not limited to behavioral issues, reading well below grade level, or low attendance at school. Additionally, those with certain educational diagnoses such as autism spectrum disorder may have trouble with aggression,20 controlling strong emotions, and understanding other people’s perspectives.21 Neurodiverse individuals typically view the world in “black and white” and laws as “simply social rules of a particular type” they could be expected to follow.22 Children who are level-one autistic are often more difficult to diagnose than those with more severe, verbally limited profound presentations. They tend to communicate more but struggle with eye contact and social cues and often “mask” to cover their communication deficiencies.23 These children still need guardians ad litem to help advocate for support and additional accommodations in the court system, schools, and communities.
Guardians ad litem should also be well-versed in available community resources and services. Children with disabilities are overrepresented in school suspensions and disciplinary reports as compared with their nondisabled peers. In 2022, the U.S. Department of Education’s Office for Civil Rights issued updated guidance about the rights of students with behavioral health needs.24 This publication’s purpose was to support students with disabilities and avoid the discriminatory use of discipline under § 504 of the Rehabilitation Code of 1973.25
Children who present with behavioral health needs are often placed in seclusion rooms – also called quiet rooms, chill chambers, or calming rooms – and/or placed in physical restraints in educational and residential settings. One study found 75% of students restrained at school have a disability.26 Seclusion, on the other hand, is defined as the involuntary confinement of a student alone in any room or area.27 It includes the use of any room or area in which the student is alone and not free to leave — or believes they are not free to leave.
Some ask, “If not restraint and seclusion, then what?” Many professionals are rethinking the use of seclusion and restraint after years of medical research on the brain. Traumatic stress can be associated with lasting changes in the amygdala, hippocampus, and prefrontal cortex brain areas.28 For example, the amygdala detects perceived threats that activate the “fight or flight” response, and children who have been traumatized are more likely to enter a hypervigilant state that often leads to increased behavioral issues.29
There are many trauma-informed crisis management interventions that may be used to better manage behaviors for both neurodiverse and neurotypical children.30 Guardians ad litem can offer assistance in securing therapies and services for children to address behavioral concerns and achieve better, evidence-based outcomes. A guardian ad litem should tour the special education classrooms and observe the child in therapy, home, and school settings. Additionally, lawyers should remember that seclusion and restraint of disabled children in school could impact the child’s ability to receive a free appropriate public education and may result in legal discrimination.
Missouri’s most recent law regarding seclusion and restraint is codified in Mo. Rev. Stat. § 160.263. Seclusion is prohibited except in “an emergency situation while awaiting the arrival of law enforcement personnel,” according to § 160.263. Isolation should only be used after de-escalating procedures have failed or in an emergency where there is imminent danger and/or harm to the child or others. Following an emergency involving the use of seclusion, isolation, or restraint, the parent or guardian of the student shall be notified through verbal or electronic means of the incident as soon as possible, but no later than the end of the day of the incident. Missouri requires the district to give the parent or guardian a written report of the restraint and specific emergency within five days.
The Missouri Department of Elementary and Secondary Education reported 8,910 injuries while in seclusion for the 2023-2024 school year and 22 incidents that included prone restraint.31 The Missouri Developmental Disabilities Council, Missouri Juvenile Justice Association, Missouri Disability Empowerment Foundation, and many concerned medical professionals and caregivers of children with disabilities have raised concerns about the improper use of restraint in both educational and residential settings.32
The guardian ad litem should have access to and review all therapy, home, and school records involving such incidents and coordinate services for the child. This includes reviewing behavioral and seclusion room reports and visual recordings of incidents, as well as attending school meetings. Guardians ad litem may request an IEP meeting to amend services, review records, or address any concerns regarding services or the use of seclusion or restraint at any time. A guardian ad litem can communicate with the child’s medical or mental health providers to address concerns regarding medications or therapy. A guardian ad litem can also offer recommendations for trainings and services as part of a court order to further the best interests of the child.33
Additionally, guardians ad litem should be familiar with the U.S. Department of Justice’s recommendations to improve outcomes for children with disabilities.34 These include, but are not limited to:
– Restraint is prohibited unless the student’s behavior poses an imminent likelihood of serious harm to the student or others.
– Restraint may not be used as a form of discipline or punishment, to prevent property destruction, as a convenience to staff, or as a substitute for appropriate educational support.
– Restraint may not be used to move a student from one location to another or prevent a student from leaving a classroom or any other physical space, unless the staff person reasonably believes that not doing so will create an imminent likelihood of serious harm to that student or others.
– Restraint may be used to protect staff and students only as a last resort after all appropriate de-escalation techniques have been implemented without success and staff reasonably believes that less-restrictive interventions would be ineffective at stopping the imminent likelihood of serious harm.
– Only a staff member who is trained in crisis prevention intervention and who is using an approved technique may restrain the student.
– Staff may use protective equipment but not to restrain or isolate a student.
– Restraint of a student must end when the student’s behavior no longer poses an imminent likelihood of serious harm to the student or others or when a less restrictive intervention would be effective at stopping the imminent likelihood of serious harm.
– A predetermined length of time or timer may not be used to determine the end of a restraint.35
Conclusion
The salvation story for our children is that we can both educate and implement change for all children, including neurodiverse children. Data36 from private sources and the U.S. Department of Justice indicates ending seclusion rooms reduces problem behaviors. Guardians ad litem should be cognizant of their duty to act in the best interests of neurodiverse children and improve outcomes for all children.
Endnotes
1 Nicole Baumer, What is Neurodiversity? HARVARD HEALTH PUBLISHING, www.health.harvard.edu/blog/what-is-neurodiversity-202111232645 (last visited Nov. 14, 2024).
2 29 U.S.C. § 791.
3 The Education for All Handicapped Children Act is also known as Public Law 94-142.
4 29 U.S.C. § 1413.
5 Athea Davis, 152, Lori Desautels, Applied Education Neuroscience Tier One Trauma Accommodating Framework Rewiring Our Perceptions of Discipline, Mind Declutter (April 7, 2024), https://revelationsineducation.com/podcast-the-nervous-system-behavior-and-education-with-dr-lori-desautels.
6 Beth Arky, et al., Why are so many kids on the spectrum taking it? And is it being misused? CHILD MIND INSTITUTE, https://childmind.org/article/autism-and-medication/ (last visited Nov. 14, 2024).
7 Lee Mann, et al., A prospective study of psychiatry patients’ attitudes toward the seclusion room experience, JOHNS HOPKINS UNIVERSITY, https://pure.johnshopkins. edu/en/publications/a-prospective-study-of-psychiatry-patients-attitudes-toward-the-s (last visited Nov. 14, 2024).
8 M.A. Stevens, et al., An Evaluation of Parent and Teacher Discrepancies on an Adaptive Behavior Measure for Youth with Autism Spectrum Disorder, Intellectual Disability, and Global Developmental Delay, J AUTISM DEV DISORD 53, 2818–2834 (2023).
9 TEMPLE GRANDIN ET AL., DIFFERENT NOT LESS (Future Horizons, 2d ed. 2020).
10 Transcript: Well+Being: How We Think with Temple Grandin, Author of “Visual Thinking,” THE WASHINGTON POST (Oct. 10, 2022), www.washingtonpost. com/washington-post-live/2022/10/10/temple-grandin-visual-thinking-neurodiversity (last visited Nov. 14, 2024).
11 Jim Dryden, Rates of autism continue to rise, new data indicate, WASHINGTON UNIVERSITY IN ST. LOUIS OFFICE OF NEUROSCIENCE RESEARCH, https://neuroscienceresearch.wustl.edu/rates-of-autism-continue-to-rise-new-data-indicate/ (last visited Nov. 14, 2024).
12 AMERICAN PSYCHIATRIC ASSOCIATION: DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS (5th ed. 2013).
13 CATHERINE LORD, ET AL., THE LANCET COMMISSION ON THE FUTURE OF CARE AND CLINICAL RESEARCH IN AUTISM. 399 The Lancet 271 (2022).
14 Emily Higgins-Walsh, What is Augmentative and Alternative Communication and how can it benefit autistic people? NATIONAL AUTISTIC SOCIETY, www.autism.org.uk/advice-and-guidance/professional-practice/aug-alt-comm (last visited Nov. 14, 2024).
15 AMERICAN SPEECH-LANGUAGE-HEARING ASSOCIATION, www.asha.org (last visited Nov. 13, 2024).
16 NAOKI HIGASHIDA, THE REASON I JUMP: THE INNER VOICE OF A THIRTEEN-YEAR-OLD BOY WITH AUTISM (Sceptre 2021).
17 ANTONIO PROKUP, SLIGHTLY BLURRED, YET UNDENIABLY REAL (Walsworth 2014).
18 Reading these books helped me better understand the sensory issues and life challenges neurodivergent people face.
19 BEHAVIOR ANALYST CERTIFICATION BOARD, www.bacb.com/bcba/ (last visited Nov. 14, 2024).
20 S.M. Kanne, et al. Aggression in children and adolescents with ASD: Prevalence and risk factors, J AUTISM DEV DISORD, 41(7), 926-937 (2011).
21 NATIONAL COUNCIL ON SEVERE AUTISM, https://ncsautism.org (last visited Nov. 14, 2024).
22 Id.
23 Level 1 Autism Spectrum Disorder (formerly known as Asperger’s Syndrome), PAUL MENTON CENTRE, https://carleton.ca/pmc/level-1-autism-spectrum-disorder-formerly-known-as-aspergers-syndrome/ (last visited Nov. 14, 2024).
24 Supporting Students with Disabilities and Avoiding the Discriminatory Use of Student Discipline under Section 504 of the Rehabilitation Act of 1973, U.S. DEPARTMENT OF EDUCATION OFFICE FOR CIVIL RIGHTS, www.ed.gov/about/offices/list/ocr/docs/504-discipline-guidance.pdf (last visited Nov. 14, 2024).
25 Fostering educational excellence and ensuring equal access, U.S. DEPARTMENT OF EDUCATION, www.ed.gov (last visited Nov. 14, 2024).
26 StoPP, MISSOURI JUVENILE JUSTICE ASSOCIATION, www.mostopp.org (last visited Nov. 14, 2024).
27 Mo. Rev. Stat. §160.263 (2021).
28 Stress Effects on Neuronal Structure: Hippocampus, Amygdala, and Prefrontal Cortex, NATIONAL LIBRARY OF MEDICINE, www.ncbi.nlm.nih.gov/pmc/articles/PMC4677120/ (last visited Nov. 8, 2024).
29 Alternatives to Restraint and Seclusion, ALLIANCE AGAINST SECLUSION AND RESTRAINT, https://endseclusion.org/2021/08/29/what-are-the-alternatives-to-restraint-and-seclusion/ (last visited Nov. 13, 2024).
30 Restraint-Free, Trauma-Informed Care, Ukeru, www.ukerusystems.com (last visited Nov. 14, 2024); Reframing Behavior, CRISIS PREVENTION INSTITUTE, www. crisisprevention.com/our-programs/reframing-behavior (last visited June 24, 2024); What is the Low Arousal Approach? STUDIO 3, www.studio3.org/training-and-coaching/low-arousal-training (last visited Nov. 14, 2024).
31 Seclusion and Restraint Resources and Data, MISSOURI DEPARTMENT OF ELEMENTARY & SECONDARY EDUCATION, dese.mo.gov/seclusion-and-restraint-resources-and-data (last visited Nov. 14, 2024).
32 StoPP, supra note 27.
33 Missouri Department of Elementary & Secondary Education, dese.mo.gov (last visited Nov. 14, 2024).
34 About DOJ’s Efforts to Combat Improper Seclusion, CIVIL RIGHTS DIVISION U.S. DEPARTMENT OF JUSTICE, www.justice.gov/crt/about-doj-s-efforts-combat-improper-seclusion.
35 42 U.S.C. § 12101 et seq.; 5 U.S.C. § 301; 28 U.S.C. §§ 509, 510; 42 U.S.C. §§ 12134, 12131, and 12205a.
36 Michael Krezmien, and Brigid Beincasa, Panel discussion, KEEP KIDS IN CLASSROOMS, STOP THE USE OF EXCLUSIONARY TIME OUT ROOMS IN SCHOOLS, May 17, 2024, www.spedchildmass.com/event/stop-the-use-of-exclusionary-time-out-rooms-in-schools; Ande Quercus, Neurodiversity, Behavior and the Problem with PBIS, ALLIANCE AGAINST SECLUSION AND RESTRAINT (May 18, 2024), https://endseclusion.org/2024/05/18/neurodiversity-behavior-and-the-problem-with-pbis.