For years, the answer to the statement “I am concerned my child has autism” was a referral to the local Regional Center for further assessment and intervention. As medical insurances have become mandated to provide autism assessment and intervention, this automatic referral has shifted as the Regional Center has become the payor of last resort for autism assessment and intervention. It behooves us as providers to direct families first to their medical insurance when this concern comes up. Lets look at this in more detail (https://www.sdrc.org/apply).

When there is concern a child under the age of 3 is at risk for autism, a referral to Early Start which falls under Regional Center, is warranted, as they contract with providers to can complete assessments and provide intervention which can include parent education, infant education, speech therapy and occupational therapy.

This changes dramatically after a child reaches the age of 3. When there is a concern about autism in a child older than the age of 3, the first step is referral to the child’s medical insurance for an autism assessment. Many providers only assess children up to a certain age, so when a child reaches late childhood, it can be tricky to find a provider to complete an autism assessment, especially for a child with Medi-cal. In these cases, sometimes the Regional Center, as the payor of last resort, might be the quickest option, although they will often still have a long waitlist.

Once a child has an autism diagnosis, the next step is to help connect the family to intervention. This can take some time depending on the family’s grieving and acceptance process. Again intervention is primarily mandated through medical insurance so that is the place to start. Sometimes the same provider completes autism assessments and provides intervention but often this involves a referral to another provider. There are different types of autism intervention that vary from a more behavioral approach (ex. ABA) to a more developmental relationship based approach (ex. Relationship Development Intervention, DIR FloorTime), which will be a topic discussed in more detail in a future BHCS newsletter. Additionally the intervention can be home-based or center-based depending on goals and family preferences. There is a varying amount of parent participation that is expected but research has shown that parent participation is hugely beneficial to achieving goals and helping parents feel empowered. (https://www.vistahillccyp.org/the-importance-of-parent-participation-in-autism-intervention-10-23-24).

School-aged children should also be referred to their school IEP team for an assessment to determine if they can qualify for school based interventions through an IEP or 504 plan. These additional supports are available through age 21 and can include vocational training. The Regional Center can provide funding for ancillary supports including respite care services, social/recreational programming, and social skills groups. Importantly, the Regional Center also takes over for day programming needs and other adult supports over the age of 21.

For many families the local autism society is an additional source of support in terms of support groups, meet ups, and resources. There are many other aspects of autism assessment and intervention that could be discussed in this newsletter. We hope we achieved our goal as an introduction for next steps when there is a concern raised by a family with the take home message to start with a screening if you are comfortable and then referral to the family’s medical insurance. Feel free to call us at SmartCare Behavioral Health Consultation Services Provider Line to discuss specific cases or share our Parent Line information with families for help them find referrals.

References:

https://assets-global.website-files.com/600754479f70fb2c4d356be6/64740987101c81b742992e54_SCQ.pdf

https://www.wpspublish.com/srs-2-social-responsiveness-scale-second-edition

AUTHOR:

Charmi Patel Rao MD, DFAACAP

Co-Medical Director, Vista Hill Foundation

Health Science Clinical Professor, UCSD Department of Psychiatry

President, San Diego Academy of Child and Adolescent Psychiatry

• Educating about sleep is the first step. This includes creating predictable routines, minimizing screen time and other basics of sleep hygiene.   SmartCare Current Topics in Autism lecture has useful information  for families.  https://www.youtube.com/watch?v=tUjYD7oci-8
• Prior to initiating treatment, clinicians should assess for co-morbidities and iatrogenic causes of sleep disturbance, including medications. (Buckley et al., 2020)
• Behavioral interventions are first line. No one approach fits all children, but there are many options to consider.
  • Adjust sleep setting (dark, non-stimulating, no electronics).
  • Promote self-soothing skills.
  • Avoid naps four hours prior to sleep.
  • Consider “bedtime fading” – parents delay bedtime by 30 minutes, then move bedtime earlier and earlier over several days.
  • Increase daytime light exposure in the morning.
  • Use graduated extinction of disruptive nighttime behaviors – parents allow incrementally more time before comforting, with incrementally shorter periods of comfort. Or alternatively, parent stays in the room but provides little interaction.
  • Referral to therapist who can provide cognitive behavioral therapy (CBT) for sleep.

• For children who continue to have difficulty despite parent education and behavioral interventions, Melatonin is the first line pharmacologic treatment
  • Melatonin has the most robust evidence for children with ASD, is safe and effective, and prolonged release may be the most effective formulation.
  • Side effects are minimal, though there is ongoing research about the impact of altered endocrine physiology associated with long-term use in animal models.

• In general, some children taking medications for sleep may have worse daytime behavior than children not taking sleep medications, while for others poor sleep can lead to more challenges in functioning (Malow et al., 2016).

• Second-line medications with some evidence in the literature include alpha agonists, such as clonidine and anti-histamines, such as diphenhydramine or hydroxyzine. There are fewer studies supporting these, and they are associated with more sedation.

Bruni, O., Angriman, M., Calisti, F., Comandini, A., Esposito, G., Cortese, S., & Ferri, R. (2018). Practitioner Review: Treatment of chronic insomnia in children and adolescents with neurodevelopmental disabilities. In Journal of Child Psychology and Psychiatry and Allied Disciplines (Vol. 59, Issue 5, pp. 489–508). Blackwell Publishing Ltd. https://doi.org/10.1111/jcpp.12812

Gringras, P., Nir, T., Breddy, J., Frydman-Marom, A., & Findling, R. L. (2017). NEW RESEARCH Efficacy and Safety of Pediatric Prolonged-Release Melatonin for Insomnia in Children with Autism Spectrum Disorder (Vol. 56). www.jaacap.org

Lalanne, S., Fougerou-Leurent, C., Anderson, G. M., Schroder, C. M., Nir, T., Chokron, S., Delorme, R., Claustrat, B., Bellissant, E., Kermarrec, S., Franco, P., Denis, L., & Tordjman, S. (2021). Molecular Sciences Melatonin: From Pharmacokinetics to Clinical Use in Autism Spectrum Disorder Melatonin: From Pharmacokinetics to Clinical Use in Autism Spectrum. Disorder. Int. J. Mol. Sci, 22, 1490. https://doi.org/10.3390/ijms

Malow, B. A., Katz, T., Reynolds, A. M., Shui, A., Carno, M., Connolly, H. v., Coury, D., & Bennett, A. E. (2016). Sleep difficulties and medications in children with Autism spectrum disorders: A registry study. Pediatrics, 137, S98–S104. https://doi.org/10.1542/peds.2015-2851H

McDonagh, M. S., Holmes, R., & Hsu, F. (2019). Pharmacologic Treatments for Sleep Disorders in Children: A Systematic Review. Journal of Child Neurology, 34(5), 237–247. https://doi.org/10.1177/0883073818821030

Ming, X., Gordon, E., Kang, N., & Wagner, G. C. (2008). Use of clonidine in children with autism spectrum disorders. Brain and Development, 30(7), 454–460. https://doi.org/10.1016/j.braindev.2007.12.007

Williams Buckley, A., Hirtz, D., Oskoui, M., Armstrong, M. J., Batra, A., Bridgemohan, C., Coury, D., Dawson, G., Donley, D., Findling, R. L., Gaughan, T., Gloss, D., Gronseth, G., Kessler, R., Merillat, S., Michelson, D., Owens, J., Pringsheim, T., Sikich, L., … Ashwal, S. (2020). Practice guideline: Treatment for insomnia and disrupted sleep behavior in children and adolescents with autism spectrum disorder: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology, 94(9), 392–404. https://doi.org/10.1212/WNL.0000000000009033

• Most adults with autism (85%) live with their parents after high school
• 85% of ASD adults who graduate from college are unemployed
• Unemployment among people with autism is approximately 90 percent
• 40% will not achieve a high school diploma

SCHOOL BASED CONSIDERATIONS

AUTISM ROADMAP High School-Transition

• Age 16, obtain state ID card
• Person Centered Plan-IEP meetings should include the SDRC and DOR (if applicable)
• Department of Rehabilitation (DOR) has work programs starting at age 16 years
• IEP should include goals in the areas of:

Self advocacy

Mobility training

Money management

Self help skills/independent living skills

Daily living skills

• Explore post-secondary options at least 2 years before graduation or exiting public school (ideally begin earlier than 2 years prior to exiting)
• High school diploma (school services end at age 18) vs. Certificate of completion (will get school services until age 22)
• Many colleges offer Disability Support Services Programs (DSPS), family would need to inquire. NO IEP’s in college! There are possible accommodations under the 504 Rehabilitation Act and Americans with Disabilities Act

SAN DIEGO REGIONAL CENTER

The following are adults services available for clients of SDRC:

Adult Day Program                                 Self Determination

Tailored Day Program                            Respite Care

Supported Employment                         Housing

Supported Living                                     In-home behavioral consultations

Independent Life Skills Training         Assistance with insurance co-pays

Paid Internships                                     Crisis Intervention/Aggressiveness:

Safety Alert, Inc., START program

Microenterprise Development              Conservatorship Assistance

FINANCIAL/LEGAL PLANNING

• Does person need a conservatorship? This is a legal process that requires a hearing before a judge to determine if the individual needs to be conserved and who should be their conservator at age 18. The Regional Center is included in the process.
• Apply for SSI-available to people whose disabilities prevent them from gainful employment
• Register to vote
• All males, regardless of disability, must register for Selective Service at age 18.
• Establish Special Need Trust/ABLE Account
• Apply for Section 8 Housing

MEDICAL CARE

Health Care Options-Most pediatric care providers end their services when the person is 18 years old

• Medi-Cal (automatically qualify if on SSI)
• Medicare-If parents are on social security, adult dependent child qualifies for benefits on their social security and will qualify for Medicare through them

Private Medical Insurance until age 26-may be longer

HOUSING

Families need to consider the following questions and plan accordingly.  Housing transitions typically take 1-3 years.

• Can they live independently?
• Can they live in their own home with support?
• Will they continue to live in your family home?
• Will they live in adult foster family care?

Not all of these behaviors cause distress or create challenges, and some in fact may be soothing for the child, so it is important to listen to youth and their care givers: what are the needs that they see?  If parents or youth believe that repetitive behaviors are causing problems or dysfunction here are some considerations.

Medications may have a role, but can also have side effects.  A recent meta-analysis of 64 randomized control trials look at the role of medication for the treatment of “stereotyped movements or speech, an insistence on sameness, extremely narrow interests, and/or atypical sensory responses.” (Zhou et al., 2021).   This study found that the effect size of anti-psychotic medications (aripiprazole, risperidone and others) was “small”.  There was preliminary evidence for the use of a number of other medications (with variable presumed mechanisms of action) including: bumetanide, divalproex, folinic acid, and guanfacine.  Antidepressants “did not have evidence for benefit”.  Other treatments lacking evidence included oxytocin, omega-3 fatty acids, methylphenidate, naltrexone, atomoxetine, secretin, NAC, and vitamin D.

Behavioral interventions are most successful when they can enhance communication, identify underling causes of stress or anxiety and target these (Boyd et al., 2012).  Recent literature has found that Applied Behavioral Analysis may be most effective with socialization, communication and expressive language, but less so with repetitive behaviors (Yu et al., 2020).  Sensory sensitivities may lead to repetitive behaviors, so youth should be considered for occupational therapy, which can help with practical solutions to diminish or acclimate to sensory stimuli, subsequently decreasing repetitive behaviors.

In review:

• Target repetitive behaviors if family and youth identify this as a problem, or there is objective evidence that said behaviors are causing dysfunction
• Recent data supports use of antipsychotics, alpha agonists, divalproex, folinic acid, though side effects should always be carefully monitored and these risks need to be weighed against the degree of benefit achieved with their use
• ABA, OT, Therapy for anxiety and depression should be considered when appropriate. While these will not directly target repetitive behaviors, they may assist with overall levels of anxiety and distress and thus may help decrease repetitive and restrictive behaviors over time.

References:

http://www.smartcarebhcs.org/autism-and-aggression-10-22-2020/

Boyd BA, McDonough SG, Bodfish JW. Evidence-based behavioral interventions for repetitive behaviors in autism. J Autism Dev Disord. 2012 Jun;42(6):1236-48. doi: 10.1007/s10803-011-1284-z. PMID: 21584849; PMCID: PMC3709868.

Yu Q, Li E, Li L, Liang W. Efficacy of Interventions Based on Applied Behavior Analysis for Autism Spectrum Disorder: A Meta-Analysis. Psychiatry Investig. 2020 May;17(5):432-443. doi: 10.30773/pi.2019.0229. Epub 2020 May 8. PMID: 32375461; PMCID: PMC7265021.

Zhou MS, Nasir M, Farhat LC, Kook M, Artukoglu BB, Bloch MH. Meta-analysis: Pharmacologic Treatment of Restricted and Repetitive Behaviors in Autism Spectrum Disorders. J Am Acad Child Adolesc Psychiatry. 2021 Jan;60(1):35-45. doi: 10.1016/j.jaac.2020.03.007. Epub 2020 May 6. PMID: 32387445.

Particularly for those more significantly affected, the issue of agitated and aggressive outbursts is often a major concern, though even in those with less significant symptom profiles, affectively charged outbursts may occur. Helping families and caregivers better understand both the causes of these incidents and the course of such outbursts can aid in reducing and preventing aggressive behaviors and may lead to helpful intervention strategies when they do occur.

Most aggressive and agitated episodes in the ASD population are best conceptualized as “meltdowns” which are a typically a reaction to either an overwhelming intense sensory experience or an unanticipated external frustration.   While sometimes compared to and described as “tantrums”, these meltdown outbursts are typically not goal-directed as most tantrums are in non-affected individuals.

For those with ASD, it is always important to consider what may be causing a meltdown—- parents and caregivers can and should be tasked with being “detectives” in figuring out possible causal factors. This can be a very powerful tool in addressing and reducing meltdowns over the long term.

Things to consider include:

• Is this a medical problem—is the individual in pain or other distress?
• Does the individual not have ability to communicate their wants or needs?
• Are cognitive or social demands too high or too low?
• Sensory dysregulation: Is there too much or too little stimulus?
• Has there been reinforcement of the behavior in the past?
• Is there a co-occurring mental health condition that might explain the problem(s)?
• Are there family/school dynamics such as bullying, moving to a new home/school, caregiver burnout?

Once (and if) a causal factor(s) for the meltdowns has been identified, it will often be feasible for parents and caretakers to intervene, either to address or to minimize their frequency and/or intensity.

An understanding of the concept of the “Rage Cycle” can also be a helpful framework for parents and caretakers in managing meltdown outbursts more effectively. The following graphic of the cycle of rage is very useful for understanding when and how a caretaker can intervene. Although referenced here in the context of individuals with ASD, the concepts can also be applied to other individuals with similar issues of reactivity, impulse control and affect management.

Most importantly, it is important to know that once the cycle of a meltdown has begun, ,,,this is NOT the time to attempt teaching what to do or introducing a new task or skill.

Early recognition of the precursors to a meltdown –when a person begins to “rumble”– can sometimes be helpful and if seen, early intervention may arrest the cycle from becoming a full meltdown. For example, rumbling may present with heightened physical activity such as jumping or pacing about, yelling, fidgeting, rapid movements or making noises. If the individual’s level of agitation is not too advanced, parents and caregivers can utilize simple strategies that may be used during the “rumbling phase” such as:

• Acknowledge the difficulty and coach simply and calmly
• Attempt gentle redirection or refocussing
• Intervene without challenging or raising the temperature
• Keep verbal input simple:   Just “walk”, don’t “talk”
• Move the individual away from the ‘offending’ environment, if feasible.
• Use proximity control– stay with the person, be present and calm
• Refer to a schedule and highlight positive future activities, if available
• Go to a predetermined “home base” or “calming place”

If the meltdown reaches the rage stage, aggressive behaviors are more likely occur and appropriate caution is important. In this phase, the profile may include disinhibition, impulsivity, emotional lability, explosive behavior, property destruction, self-injurious behavior, yelling, biting, hitting or crying. During this time, it is of utmost importance to keep the individual and those around them safe. Interventions during a meltdown may include:

• Protect the individual and others
• Disengage emotionally, this is not about you—getting agitated or loud won’t help.
• Use few words, remain calm and quiet.
• Be flexible—extra tolerance and a bit of slack may help defuse the rage state.
• Have a plan and follow it— e.g., siblings go to their rooms, only certain people will interact with individual, have pre-identified the safe places to go, etc.
• Attempt to move the individual to a “safe place” or “home base”
• Obtain assistance if needed.
• Do not discipline– this is not the “teachable phase” and retribution does no good.

Once the meltdown has begun to pass, the individual with ASD (or any other predisposing condition) will enter a “recovery” phase.   Keep in mind that they have just gone through an intense sensory and emotional overwhelm— often we will see someone needing to sleep, cry, withdraw or appear exhausted. During this time, allowing the person time to sleep, rest or engage in a preferred activity may be needed.

Again, this is not the time to teach a new skill or place demands on the person as they are in cool down mode, not learning mode.

Helping families and caregivers understand meltdowns and the rage cycle is rarely simple, but sustained efforts can provide effective, long term tools for addressing agitation and aggressive outbursts. Consultation with mental health providers and behavioral experts can be an important asset and should be part of the clinical team helping the ASD individual.

Some services provided by the San Diego Regional Center for families struggling with aggression include:

1. Consultation with a behavioral psychologist
2. Safety Alert, Inc. ( https://www.safetyalert.net/ )
3. START program  https://www.exodusrecovery.com/vista-start/.
4.  Fred Finch Specialized Wraparound https://www.fredfinch.org/specialized-wraparound
5. Advance CIRT (Crisis Intervention Response Team) Advance North (760) 294-1188 Advance San Diego (619) 756-4095

   All programs require a referral from the SDRC. Families may request these services through their Regional Center service coordinator.

   Reference:

Myles, B.S., and Southwick, J. (1999) Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns. Shawnee Mission, KS: Autism Asperger Publishing Company.

https://www.cdc.gov/ncbddd/autism/data.html

7 year old boy with chief complaint of “frequent meltdowns”. Additional history: daily meltdowns (crying, hitting) with loud sounds or when asked to wear certain clothing; wants to make friends but poor boundaries and accidentally hurts peers at school when he is playing with them; hard time sitting during seat work at school and prefers to move around when doing his work. There is no known language delay or cognitive delay.

It is thought that the prevalence of Sensory Processing Disorder (SPD) is from 5-15% of school-aged children. SPD is commonly misunderstood and either under-diagnosed or misdiagnosed as Autism or Attention Deficit Hyperactivity Disorder (ADHD). While children with Autism commonly have sensory processing difficulties, it is different than for children with SPD.

Sensory processing is how the nervous system manages incoming sensory information and generates responses. Sensory integration is how the body’s eight senses work together to create the body’s responses. The eight senses include:

A child is diagnosed with a SPD when there is difficulty taking in and interpreting sensory information so that an appropriate response can be generated. Here are some indicators that there might be a concern for SPD.

1. Hyper-acute hearing
2. Hypersensitive hearing
3. Touch aversion
4. Poor motor coordination
5. Poor sense of boundaries
6. High pain tolerance
7. Aggression
8. Distractibility
9. Delayed language development
10. Difficulty learning new things

It is not hard to see how these children can be misdiagnosed with Autism or ADHD. Children with Autism also have impairments in communication, social interactions and present with repetitive behaviors and restricted interests, symptoms that are not seen in SPD alone. Children with ADHD present with hyperactivity, impulsivity and inattention without other sensory processing difficulties.

The behavioral symptoms that are seen with SPD (namely aggression, distractibility, difficulty learning new things) occur as a result of the sensory processing difficulties. Sensory input is organized in a manner that enables an individual to establish a sense of where the body is in time and space, to feel safe in one’s own body and to accurately perceive the body’s relationship to the environment. When this doesn’t happen, it can lead to poor arousal regulation. One significant problem is that SPD is not identified as a diagnosis in the DSM, making it difficult to diagnose. Another barrier is that psychiatrists and medical professionals in general are not well trained in diagnosing SPD.

The goal of this e-Weekly article is not to make all of us experts in SPD and other sensory challenges, but to help us to be better aware when the concern might be there and refer for an appropriate evaluation, most likely with an occupational therapist, who are trained to diagnosis SPD and other sensory challenges and make recommendations for the appropriate treatment.