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Behavioral Seismology

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Article in series on TIBA (trauma-informed behavior analysis) by Dr. Teresa Camille Kolu, Ph.D., BCBA-D

For many people including up to 90% of autistic women, our behaviors, moods, and medical symptoms worsen every month in the luteal phase of the menstrual cycle. But why? This may baffle even the most highly trained OBGYNs and behavioral scientists, let alone parents, caregivers, staff, and clients receiving behavioral services.

To Dr. Kolu, behavioral seismology is the scientific study of cyclical changes in a person’s experience that result in predictable (and potentially damaging) disruptions in an individual’s behavioral environment. Predictions about cyclical needs could be used to reduce the risk of damage and injury to clients and others related to hormone-behavior interactions. People can experience an increase in behavior needs, emotional needs, medical needs, and challenging interactions between all three, but it can help to know and be able to predict when they will be most at risk.

For individuals assigned female at birth (and relevant to anyone who loves, cares for, or conducts behavioral support for someone with these characteristics) , Dr. Camille Kolu discusses these four distinct behavioral risk profiles as ways to help make sense of the predictable disruptions that can occur regularly and monthly for up to 2 weeks at a time (as in PMDD) or for several years (as in perimenopause). The 4 risk profiles include the following:

  1. PCOS or polycystic ovary syndrome
  2. PMDD or premenstrual dysphoric disorder
  3. Perimenopause and
  4. PME (premenstrual exacerbation).

These 4 profiles are each accompanied by a pdf fact sheet downloadable as a resource in the new course on Behavioral Seismology from Cusp Emergence University. In each PDF are characteristic risk factors; biological signs; medical, behavioral and other symptoms the risk profile makes more likely; a to-do list for providers; and notes on expected interactions between behavior and the medical diagnosis. For instance, in PCOS, a client in behavioral services might experience self-injury related to the predictable pain during ovulation or food related behavior challenges that are related to the characteristic insulin resistance. In PMDD, a client in behavioral services who also has autism might experience sudden explosive outbursts in the second half of their menstrual cycle.

What are some of the benefits of becoming a healthcare or behavioral provider more informed about behavioral seismology?

Information can help to demystify behavior needs, as we put them into the context of an individual suffering with medical issues that need treatment. As a case example, one of Dr. Kolu’s patients had a diagnosis of PCOS (polycystic ovary syndrome) and took related medication. However, the behavioral team thought of that diagnosis as completely divorced from their behavioral treatment, and had never been trained on (or requested support to learn) what specific behaviors were anticipated and when they would get worse. As a result, the behavioral team had written goals that were inappropriate and inflexible. In most of the risk profiles we discuss in the Behavioral Seismology course, behaviors improve for the first two weeks of the cycle, when reinforcers are more potent. In the luteal phase of the cycle, a behavior targeted for reduction is likely to come raging back, as several things occur: one of the most significant is that aversive stimuli are temporarily more aversive! Another is that conditioning processes (such as extinction) are affected by hormone levels; for someone with trauma, the things we call “conditioned fear stimuli” or reminders of bad things that happened in the past, seem more present and potent during the luteal phase. Could these changes affect behavior? Absolutely! What if we ignored these biological realities and expected clients to simply do better and better on their goals in a linear trajectory? Could this be demoralizing for them and frustrating for caregivers and uninformed providers?

We can be more flexible in goal writing, more appropriate in support, more predictive in funding needs, and more compassionate in treatment, when we truly take someone’s medical needs into account. This is the point of the Behavior Analysis Certification Board (BACB)’s Ethics Code Item 2.12. For providers interested in taking that code seriously, Behavioral Seismology (4 CEUs total) provides an ethics CEU focused on treating behavior in ways much more contextually appropriate.

Other things you’ll find in the course:

  • 4 pdf risk profiles
  • An aversive stimulus tracker template (and filled out example)
  • A Cyclical Needs Conversation Guide for providers
  • A tool called “Rethink Your Language” (using the example of how the word “aggression” can cause impactful changes in someone’s life)
  • Insulin Resistance Handout (with information about how this condition intersects with each risk profile discussed in the training)
  • Information on how autism intersects in surprising ways with several of the risk profiles (and a tool called “Acting on Combined Risk”)
  • A Cyclic Behavior Support Plan Template
  • The Cyclic Systems Support Checklist (for companies and teams making these changes in their processes)
  • A video script for the 8 videos accompanied by printable handouts
  • Full references for over 70 published articles (including ones by autistic providers on lived experiences of individuals affected by both autism and hormone-behavior interactions
  • Thought questions
  • Thoughtful intersections and objectives to apply ethics codes to understanding the ethical implications of information in each chapter
  • and much more.

Want to learn more? Take the course, contact Dr. Kolu to let us know you want to attend one of our live training sessions on Behavioral Seismology, or see the references below.

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Behavioral Seismology References by Topic

Introduction to behavioral seismology:

Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. Copyright © 2020, BACB®, All rights reserved.

Beltz, A. M., Corley, R. P., Wadsworth, S. J., DiLalla, L. F., & Berenbaum, S. A. (2020). Does puberty affect the development of behavior problems as a mediator, moderator, or unique predictor?. Development and psychopathology, 32(4), 1473-1485.

Graber JA (2013). Pubertal timing and the development of psychopathology in adolescence and beyond. Hormones and Behavior, 64(2), 262–269.

Negriff S, & Susman EJ (2011). Pubertal timing, depression, and externalizing problems: A framework, review, and examination of gender differences. Journal of Research on Adolescence, 21(3), 717–746. doi: 10.1111/j.1532-7795.2010.00708.x 

References for PCOS:

Cherskov, A., Pohl, A., Allison, C., Zhang, H., Payne, R. A., & Baron-Cohen, S. (2018). Polycystic ovary syndrome and autism: a test of the prenatal sex steroid theory. Translational psychiatry, 8(1), 136.

Dan, R., Canetti, L., Keadan, T., Segman, R., Weinstock, M., Bonne, O., … & Goelman, G. (2019). Sex differences during emotion processing are dependent on the menstrual cycle phase. Psychoneuroendocrinology, 100, 85-95.

Dumesic, D. A., & Lobo, R. A. (2013). Cancer risk and PCOS. Steroids, 78(8), 782-785.

Evans, S. M., & Foltin, R. W. (2006). Exogenous progesterone attenuates the subjective effects of smoked cocaine in women, but not in men. Neuropsychopharmacology, 31(3), 659-674.

Evans, S. M., Haney, M., & Foltin, R. W. (2002). The effects of smoked cocaine during the follicular and luteal phases of the menstrual cycle in women. Psychopharmacology, 159, 397-406.

Katsigianni, M., Karageorgiou, V., Lambrinoudaki, I., & Siristatidis, C. (2019). Maternal polycystic ovarian syndrome in autism spectrum disorder: a systematic review and meta-analysis. Molecular psychiatry, 24(12), 1787-1797.

Mulligan, E. M., Nelson, B. D., Infantolino, Z. P., Luking, K. R., Sharma, R., & Hajcak, G. (2018). Effects of menstrual cycle phase on electrocortical response to reward and depressive symptoms in women. Psychophysiology, 55(12), e13268.

Sakaki, M., & Mather, M. (2012). How reward and emotional stimuli induce different reactions across the menstrual cycle. Social and personality psychology compass, 6(1), 1-17.

References for PMDD:

Browne, T. K. (2015). Is premenstrual dysphoric disorder really a disorder? Journal of Bioethical Inquiry, 12, 313-330.

Ellis, R., Williams, G., Caemawr, S., Craine, M., Holloway, W., Williams, K., … & Grant, A. (2025). Menstruation and Autism: a qualitative systematic review. Autism in Adulthood.

Epperson, C. N., Pittman, B., Czarkowski, K. A., Stiklus, S., Krystal, J. H., & Grillon, C. (2007). Luteal-phase accentuation of acoustic startle response in women with premenstrual dysphoric disorder. Neuropsychopharmacology, 32(10), 2190-2198.Ford, 2012

Freeman, E. W., & Sondheimer, S. J. (2003). Premenstrual dysphoric disorder: recognition and treatment. Primary care companion to the Journal of clinical psychiatry, 5(1), 30.

Gingnell, M., Bannbers, E., Wikström, J., Fredrikson, M., & Sundström-Poromaa, I. (2013). Premenstrual dysphoric disorder and prefrontal reactivity during anticipation of emotional stimuli. European Neuropsychopharmacology, 23(11), 1474-1483.

Halbreich, U., Borenstein, J., Pearlstein, T., & Kahn, L. S. (2003). The prevalence, impairment, impact, and burden of premenstrual dysphoric disorder (PMS/PMDD). Psychoneuroendocrinology, 28, 1-23.

Kulkarni, J., Leyden, O., Gavrilidis, E., Thew, C., & Thomas, E. H. (2022). The prevalence of early life trauma in premenstrual dysphoric disorder (PMDD). Psychiatry research, 308, 114381.

Obaydi, H., & Puri, B. K. (2008). Prevalence of premenstrual syndrome in autism: a prospective observer-rated study. Journal of International Medical Research, 36(2), 268-272.

Protopopescu, X., Tuescher, O., Pan, H., Epstein, J., Root, J., Chang, L., … & Silbersweig, D. (2008). Toward a functional neuroanatomy of premenstrual dysphoric disorder. Journal of affective disorders, 108(1-2), 87-94.

Sacher, J., Zsido, R. G., Barth, C., Zientek, F., Rullmann, M., Luthardt, J., … & Sabri, O. (2023). Increase in serotonin transporter binding in patients with premenstrual dysphoric disorder across the menstrual cycle: a case-control longitudinal neuroreceptor ligand positron emission tomography imaging study. Biological Psychiatry, 93(12), 1081-1088.

References for Perimenopause:

Ambikairajah, A., Walsh, E., & Cherbuin, N. (2022). A review of menopause nomenclature. Reproductive health, 19(1), 29.

Arnot, M., Emmott, E. H., & Mace, R. (2021). The relationship between social support, stressful events, and menopause symptoms. PloS one, 16(1), e0245444.

Avis, N. E., Crawford, S. L., Greendale, G., Bromberger, J. T., Everson-Rose, S. A., Gold, E. B., … & Study of Women’s Health Across the Nation. (2015). Duration of menopausal vasomotor symptoms over the menopause transition. JAMA internal medicine, 175(4), 531-539.

Constantine, G. D., Graham, S., Clerinx, C., Bernick, B. A., Krassan, M., Mirkin, S., & Currie, H. (2016). Behaviours and attitudes influencing treatment decisions for menopausal symptoms in five European countries. Post Reproductive Health, 22(3), 112-122.

Cusano, J. L., Erwin, V., Miller, D., & Rothman, E. F. (2024). The transition to menopause for autistic individuals in the US: a qualitative study of health care challenges and support needs. Menopause, 10-1097.

Duralde, E. R., Sobel, T. H., & Manson, J. E. (2023). Management of perimenopausal and menopausal symptoms. Bmj, 382.

Guthrie, J. R., Dennerstein, L., Taffe, J. R., & Donnelly, V. (2003). Health care-seeking for menopausal problems. Climacteric, 6(2), 112-117.

Hamilton, A., Marshal, M. P., & Murray, P. J. (2011). Autism spectrum disorders and menstruation. Journal of adolescent health, 49(4), 443-445.

Hoyt, L. T., & Falconi, A. M. (2015). Puberty and perimenopause: reproductive transitions and their implications for women’s health. Social science & medicine, 132, 103-112.

Karavidas, M., & de Visser, R. O. (2022). “It’s not just in my head, and it’s not just irrelevant”: autistic negotiations of menopausal transitions. Journal of Autism and Developmental Disorders, 52(3), 1143-1155.

Kling, J. M., MacLaughlin, K. L., Schnatz, P. F., Crandall, C. J., Skinner, L. J., Stuenkel, C. A., … & Faubion, S. S. (2019, February). Menopause management knowledge in postgraduate family medicine, internal medicine, and obstetrics and gynecology residents: a cross-sectional survey. In Mayo Clinic Proceedings (Vol. 94, No. 2, pp. 242-253). Elsevier.

Moseley, R. L., Druce, T., & Turner-Cobb, J. M. (2020). ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause. Autism, 24(6), 1423-1437.

Moseley, R. L., Druce, T., & Turner‐Cobb, J. M. (2021). Autism research is ‘all about the blokes and the kids’: Autistic women breaking the silence on menopause. British Journal of Health Psychology, 26(3), 709-726.

Namazi, M., Sadeghi, R., & Behboodi Moghadam, Z. (2019). Social determinants of health in menopause: an integrative review. International journal of women’s health, 637-647.

Ohayon, M. M. (2006). Severe hot flashes are associated with chronic insomnia. Archives of internal medicine, 166(12), 1262-1268.

O’Reilly, K., McDermid, F., McInnes, S., & Peters, K. (2023). An exploration of women’s knowledge and experience of perimenopause and menopause: An integrative literature review. Journal of clinical nursing, 32(15-16), 4528-4540.

Pinkerton, J. V., Stovall, D. W., & Kightlinger, R. S. (2009). Advances in the treatment of menopausal symptoms. Women’s Health, 5(4), 361-384.

Pinkerton, J. V., & Stovall, D. W. (2010). Bazedoxifene when paired with conjugated estrogens is a new paradigm for treatment of postmenopausal women. Expert opinion on investigational drugs, 19(12), 1613-1621.

Polo-Kantola, P. (2011). Sleep problems in midlife and beyond. Maturitas, 68(3), 224-232.

Roth, T., Coulouvrat, C., Hajak, G., Lakoma, M. D., Sampson, N. A., Shahly, V., … & Kessler, R. C. (2011). Prevalence and perceived health associated with insomnia based on DSM-IV-TR; international statistical classification of diseases and related health problems, tenth revision; and research diagnostic criteria/international classification of sleep disorders, criteria: results from the America insomnia survey. Biological psychiatry, 69(6), 592-600.

Santen, R. J., Stuenkel, C. A., Burger, H. G., & Manson, J. E. (2014). Competency in menopause management: whither goest the internist?. Journal of women’s health, 23(4), 281-285.

Santoro, N. (2016). Perimenopause: from research to practice. Journal of women’s health, 25(4), 332-339.

Williams, R. E., Kalilani, L., DiBenedetti, D. B., Zhou, X., Fehnel, S. E., & Clark, R. V. (2007). Healthcare seeking and treatment for menopausal symptoms in the United States. Maturitas, 58(4), 348-358.

Wood, K., McCarthy, S., Pitt, H., Randle, M., & Thomas, S. L. (2025). Women’s experiences and expectations during the menopause transition: a systematic qualitative narrative review. Health Promotion International, 40(1), daaf005.

Zhu, C., Thomas, N., Arunogiri, S., & Gurvich, C. (2022). Systematic review and narrative synthesis of cognition in perimenopause: The role of risk factors and menopausal symptoms. Maturitas, 164, 76-86.

References for Behavioral Perspectives on Topics in Hormones and Behavior:

Altundağ, S., & Çalbayram, N. Ç. (2016). Teaching menstrual care skills to intellectually disabled female students. Journal of clinical nursing, 25(13-14), 1962-1968.

Ballan, M. S., & Freyer, M. B. (2017). Autism spectrum disorder, adolescence, and sexuality education: Suggested interventions for mental health professionals. Sexuality and Disability, 35, 261-273.

Barrett, R.P. Atypical behavior: Self-injury and pica. In Developmental-Behavioral Pediatrics: Evidence and Practice; Wolraich, M.L., Drotar, D.D., Dworkin, P.H., Perrin, E.C., Eds.; C.V. Mosby Co.: St. Louis, MO, USA, 2008; pp. 871–885.

Carr, E. G., Smith, C. E., Giacin, T. A., Whelan, B. M., & Pancari, J. (2003). Menstrual discomfort as a biological setting event for severe problem behavior: Assessment and intervention. American Journal on Mental Retardation, 108(2), 117-133.

Edelson, S. M. (2022). Understanding challenging behaviors in autism spectrum disorder: A multi-component, interdisciplinary model. Journal of personalized medicine, 12(7), 1127.

Gomez, M. T., Carlson, G. M., & Van Dooren, K. (2012). Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation. Health Care for Women International, 33(8), 678-694.

Holmes, L. G., Himle, M. B., & Strassberg, D. S. (2016). Parental sexuality-related concerns for adolescents with autism spectrum disorders and average or above IQ. Research in Autism Spectrum Disorders, 21, 84-93.

Jain, N. (2024). Effect of hormonal Imbalance on mental health among young women.

Klett, L. S., & Turan, Y. (2012). Generalized effects of social stories with task analysis for teaching menstrual care to three young girls with autism. Sexuality and Disability, 30, 319-336.

Laverty, C., Oliver, C., Moss, J., Nelson, L., & Richards, C. (2020). Persistence and predictors of self-injurious behaviour in autism: a ten-year prospective cohort study. Molecular autism, 11, 1-17.

Mattson, J. M. G., Roth, M., & Sevlever, M. (2016). Personal hygiene. Behavioral health promotion and intervention in intellectual and developmental disabilities, 43-72.

Moreno, J. V. (2023). Behavioral Skills Training for Parent Implementation of a Menstrual Hygiene Task Analysis. The Chicago School of Professional Psychology.

Rajaraman, A., & Hanley, G. P. (2021). Mand compliance as a contingency controlling problem behavior: A systematic review. Journal of Applied Behavior Analysis, 54(1), 103-121.

Richman, G. S., Reiss, M. L., Bauman, K. E., & Bailey, J. S. (1984). Teaching menstrual care to mentally retarded women: Acquisition, generalization, and maintenance. Journal of Applied Behavior Analysis, 17(4), 441-451.

Rodgers, J., & Lipscombe, J. O. (2005). The nature and extent of help given to women with intellectual disabilities to manage menstruation. Journal of Intellectual and Developmental Disability, 30(1), 45-52.

Shors, T. J., Lewczyk, C., Pacynski, M., Mathew, P. R., & Pickett, J. (1998). Stages of estrous mediate the stress-induced impairment of associative learning in the female rat. Neuroreport, 9(3), 419-423.

Wegerer, M., Kerschbaum, H., Blechert, J., & Wilhelm, F. H. (2014). Low levels of estradiol are associated with elevated conditioned responding during fear extinction and with intrusive memories in daily life. Neurobiology of learning and memory, 116, 145-154.

Veazey, S. E., Valentino, A. L., Low, A. I., McElroy, A. R., & LeBlanc, L. A. (2016). Teaching feminine hygiene skills to young females with autism spectrum disorder and intellectual disability. Behavior analysis in practice, 9(2), 184-189.

References for Conclusions (Menstruation as a Vital Sign; Insulin Resistance and Hormones; Premenstrual Exacerbation)

Click to access MenstruationAndMenopauseAtWork.pdf

https://casadesante.com/blogs/pcos/pcos-fmlapcos/pcos-fmla
Is PMDD a Disability? Workplace Challenges and Accommodations

Click to access discipline-q-a.pdf

Disciplining Students With Disabilities
https://www.prevention.com/health/g43724095/best-period-tracker-app/

Akturk, M., Toruner, F., Aslan, S., Altinova, A. E., Cakir, N., Elbeg, S., & Arslan, M. (2013). Circulating insulin and leptin in women with and without premenstrual disphoric disorder in the menstrual cycle. Gynecological Endocrinology, 29(5), 465-469.

Diamanti-Kandarakis, E., & Christakou, C. D. (2009). Insulin resistance in PCOS. Diagnosis and management of polycystic ovary syndrome, 35-61.

Eckstrand, K. L., Mummareddy, N., Kang, H., Cowan, R., Zhou, M., Zald, D., … & Avison, M. J. (2017). An insulin resistance associated neural correlate of impulsivity in type 2 diabetes mellitus. PLoS One, 12(12), e0189113.

Kolu, T. C. (2023). Providing buffers, solving barriers: Value-driven policies and actions that protect clients today and increase the chances of thriving tomorrow. Behavior Analysis in Practice, 1-20.

Kuehner, C., & Nayman, S. (2021). Premenstrual exacerbations of mood disorders: findings and knowledge gaps. Current psychiatry reports, 23, 1-11.

Lin, J., Nunez, C., Susser, L., & Gershengoren, L. (2024). Understanding premenstrual exacerbation: navigating the intersection of the menstrual cycle and psychiatric illnesses. Frontiers in Psychiatry, 15, 1410813.

Sullivan, M., Fernandez-Aranda, F., Camacho-Barcia, L., Harkin, A., Macrì, S., Mora-Maltas, B., … & Glennon, J. C. (2023). Insulin and disorders of behavioural flexibility. Neuroscience & biobehavioral reviews, 150, 105169.

Ueno, A., Yoshida, T., Yamamoto, Y., & Hayashi, K. (2022). Successful control of menstrual cycle‐related exacerbation of inflammatory arthritis with GnRH agonist with add‐back therapy in a patient with rheumatoid arthritis. Journal of Obstetrics and Gynaecology Research, 48(7), 2005-2009.

Vollmar, A. K. R., Mahalingaiah, S., & Jukic, A. M. (2024). The Menstrual Cycle as a Vital Sign: a comprehensive review. F&S Reviews, 100081.

Yu, W., Zhou, G., Fan, B., Gao, C., Li, C., Wei, M., … & Zhang, T. (2022). Temporal sequence of blood lipids and insulin resistance in perimenopausal women: the study of women’s health across the nation. BMJ Open Diabetes Research & Care, 10(2).

What are some relationships between buffers and triggers?

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Another article in the TIBA series by Dr. Teresa Camille Kolu BCBA-D

In Chapter 8 of our course on Trauma Sensitivity, we cover the concept of “triggers” and what we can do about them. We cover this mostly from a responsive perspective in the course and use the following operational definition: “Triggers are historically meaningful stimulus complexes or relations between them. In their presence, behaviors or response patterns may be temporarily more likely to occur.” We continue with the big idea from Chapter 8 of that course, “One of the most supportive actions we can take is to stay mindful and do what needs doing in the moment”.

However, another huge thing we can do in helping someone through those triggering events or moments is to plan ahead. Below are some questions we ask our clients and their family members to answer, if they are interested in exploring this. Read on if you’re interested in some examples (we share a brief example of a dyad’s answers, where one member is the 5 year old kid, and the other is a parent). (Oh, and it may be helpful to check out the IPASS (find it in our RESOURCES tab)- this is a little tool we use for folks to go through their sensory environment for clues about triggers, if they need somewhere to start.)

Questions:

1.Name a person you love or a primary relationship you care deeply about.

2.Name an action that you do that shows compassion with them.

3.Name some things the person also does… that REALLY get under your skin.

4.Name an environmental situation or trigger that happens right before it is HARDEST to keep your cool.

5.List some things you start to notice when you’re feeling about to blow up/ lose your cool/ start doing actions that are inconsistent with your values to that #1 person.

6.State things you do to calm down in those moments that REALLY work or are most likely to work.

7.If you DIDN’T act to calm down and things kept getting worse, state the action(s) you would be likely to use next in the presence of that person.

Growth statement: Write your plan to prevent the triggers (3 and 4 above) from leading to actions that are inconsistent with your values (e.g., 7), by doing (6) as soon as you begin to notice things about your insides or the outside environment (5).

Ready to see this in action? Below are some parent answers. Keep in mind that neurodivergent parents often have neurodivergent children (or, looking backward, that neurodivergent children often have neurodivergent parents, whose qualities might not be appreciated until later, in the context of exploring diagnoses with their own children). Have you ever seen a mom struggling with her own misophonia exactly at the same time her child uses loud repetitive noises? Talk about triggering (for and to each other)! But stay hopeful and in the moment, because as hard as it is to be the thing in your loved one’s environment that sets them off, it’s lovely to be the person in their environment who can really understand where they’re coming from.

Parent Example: Answers to 7 questions, above

1.I love my kids.

2.I love it when I am able to use kind words and a calm voice with them.

3.Sometimes my kid makes repetitive noises, does not listen or interrupts me, or doesn’t follow instructions.

4.It is most difficult to keep my cool with my kids when I’m running late somewhere and my kid is not following instructions or is not doing something the “right” way.

5.I start to notice my face getting hot, my neck and face muscles are strained, and my breathing is shallow and fast. 

6.If I splash water on my face, relax my muscles, stop and hug my kid, and breathe deeply, it helps to calm me down in the moment.

7.If I skip that step above, I usually proceed to raise my voice and may even shout or say things I don’t mean (things that are not kind and compassionate).

Parent Growth plan: “When I’m late somewhere and it’s really noisy, it’s especially important that I start to notice when I’m using shallow breath, the noise around me is increasing, or I’m noticing everything “wrong” my kids do and nothing right they’re doing. Right then, before I talk to my kid, I need to immediately try some of my calming strategies I listed above.”

OK, now for the kid’s answers.

1.I love my mom and baby brother.

2.I love it when I am able to keep playing, share, have fun.

3.Sometimes my mom tells me to stop doing something I love or tells me how to do something better or my brother takes my stuff.

4.When mom yells or my brother takes my stuff or we have to leave my game or book, it is most difficult to keep my cool.

5.I start to notice my face getting hot, my movements are jerky, my chest hurts, and my breathing is fast. 

6.If I hug my mom, splash water on my face, stop and do some jumping jacks and then sit and breathe, it helps to calm me down in the moment.

7.If I skip that step above, I usually yell, hit my brother, or shout “NO! I WON’T!”.

Growth plan my parents can help with: When I’m being asked to stop playing or to do something that interrupts my flow, notice when I’m breathing faster and having a hard time talking. You can help by giving me a hug, doing some jumping jacks with me, and sitting with me and helping me to breathe.

At this point, we ask the parent some meaningful questions to help them make sense of what we’re noticing. And often this is uncomfortable (but becomes exciting and doable) as they first think, “oh, but won’t we be reinforcing escalation?” No, we’re turning it off.

Parents or caregivers, did you notice…

-Whether your having a hard time makes it harder for you to help your other person with THEIR hard time?

-Whether your hard time perhaps CONTRIBUTES to their hard time?

-Whether your triggers are echoed by the ones that seem to affect your kid or client? (e.g., are you teaching your other person to struggle with the same thing you struggle with, without your meaning for this to happen)?

-Whether your triggers might be easier to manage at a period of time when you (or both of you) are well fed, rested, and exercised?

New 4h course: Autism, TIBA and Ethics

02 Wednesday Feb 2022

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Last time I wrote, I shared some ideas about this intersection. Today, the new course is up! Before you go check it out (and claim your February 2022 coupon for 20% off by typing ASD2022)– during the introductory month of the course)- learn why I’m so passionate about screening for trauma in a population so many behavior analysts have been working with (for some, virtually their entire professional lives).

Have you ever worked with someone in pain? How do we know if they’re currently hurting, whether it’s because they are sick, it’s related to interventions we chose, or from experiences we reminded them of? How would we know if that was the case? Did that person cower, freeze, or grimace? Did they flinch, close their eyes, seem to “zone out”? Perhaps someone has run away, played repetitively with the toys they had, or fallen asleep at school? Sometimes, respondent behaviors may be giveaways that people are experiencing fear or in pain, but successful avoidance behavior can hide that pain. Other times people have been through experiences making them more likely to use aggression or property destruction. In the least, we should consider whether our interventions cause harm. This harm could include causing our clients distress or pain, exposing someone to additional risks, detracting from their quality of life, failing to program in sustainable ways that transfer to the maintaining environment, and so much more.

A new training is up on Cusp.University on the intersection of autism, trauma informed behavior analysis, and ethics. By the time we near the end, we have discussed and revisited the idea of contra-indicated procedures. Given that lists exist for diagnoses of autism alone, why isn’t there a list of best practices appropriate for clientele meeting diagnostic criteria for autism who also come to therapy with trauma histories? Why is it so difficult to find articles suggesting best treatment paths for individuals with both autism and trauma related experiences in the literature? In behavior analysis, answers to these questions may be related to our field, its historical publishing practices, and the ethical and pragmatic need to individualize procedures for each client.

In terms of publishing practices, a panelist in ABAI’s “Exploring Publication Bias in Behavior Analytic Research” (which included Galizio, Travers, and Ringdahl, 2021) stated,

“No intervention is guaranteed to work for every individual, every time, in every context.”

They suggested that authors writing about their research should include more detailed descriptions of the conditions under which successful implementation of the intervention occurred.

When we screen for trauma related or aversive historical situations and stimuli, we often learn things that

  • help us prioritize treatment,
  • document risks for certain procedures,
  • avoid or prioritize certain stimuli,
  • detect environmental conditions that are acting as motivational operations and conditioned MOs,
  • and ultimately, perhaps minimize harm to our client.

Screening for trauma can help to identify individuals with prior risk factors who are at risk for experiencing additional adverse events and aversive conditioning. Attendees learn in chapter 1 some facts about how being autistic is to be at increased risk for trauma, bullying, abuse, increased likelihood of experiencing foster care—and in chapter 3, learn about the higher rates of experiencing restraint, seclusion and being excluded from school.

But another effect of screening – one that should affect all behavior analysts—could be an increased awareness of the fact that behavior analytic procedures are being used all the time for this population at the intersection of autism and trauma. Perhaps the least we can do is to begin doing behavior analysis with people instead of to people, and to be transparent, inviting, and open in looking at options—and their likelihood of causing harm either now in the future.

Let’s look at this juxtaposition: we have a great ethical responsibility to do no harm, but also an ability to cause great harm. With using any behavioral procedure there comes a risk that we may do just that. This is especially true when we don’t have literature evidence that a given intervention is appropriate and effective for the person’s needs given their history and current situation. Perhaps they don’t actually need behavior analysis seeking to change their behavior as much as they need a roof, a meal, a bus pass, a blender, a respite provider, a ride to the doctor, a coat, a medication, a trip to the dentist… the list could go on and on. So clearly the first step is to see what the person needs.

When designing an individualized behavior support plan, two things are important to consider:

(1) the risks and benefits for the client themselves, given their needs, values, environment, etc., (e.g., the long- and short-term outcomes of procedures and decisions, and

(2) evidence the procedure is appropriate for our client.

In terms of evidence, when considering decisions in context of the literature, few studies provide sufficient detail in characteristics of the participants. So it is difficult to tell, reminds the panel, which characteristics were present for study participants received successful or unsuccessful interventions. Thus we can’t really tell how many of the massive number of papers on treating behaviors in autism, also apply and were conducted with individuals with autism who also had a trauma background. But statistics suggest many of them must have. In the science of behavior analysis, each subject’s behavior is its own control, so if we control our conditions and try to measure well, we may reveal additional elements of historical and current behavioral environments that exert contextual and stimulus control on the client’s behavior- and that change their needs. At times, historical aversive conditioning experiences may have contributed changes making it painful or inappropriate for clients to experience certain interventions. As we discuss in the new training, some of those conditioning experiences may even have occurred during and as part of behavioral treatment.

We can’t know for sure what our clients have been through. But when owe it to them to honor those experiences if they are comfortable sharing them.

Here are some of the things you’ll learn.

Course Objectives: 

1. List connections between autism and trauma in the research 

2. State different kinds or examples of trauma that may affect individuals with autism 

3. State supportive ways to ask about trauma histories

4. Select examples of how medical history can be related to trauma

5. State examples of repertoires beneficial for practitioners who serve clients affected by both autism and trauma

Ready to learn more? The new training offers hints from Dr. Kolu on how we begin the conversation about informed consent and screening for trauma, why assent is so important, how trauma and autism might intersect with medical needs affecting our clients, and more. And all the resources are available as free content in the preview section, so go grab that now! See you at a conference soon or find us online. And thank you for listening!

Special Faith: Is this child welcome in my church?

18 Thursday Jul 2013

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When Jeanie’s son was 7, he bit a peer nearby during Children’s Ministry. Many members were horrified and Jeanie felt ashamed and totally incapable of helping Jason. He had never been fully accepted anyway, she explained to the youth pastor as they discussed the painful events of the last service. “He’s very loud and moves around during the service, flapping his arms and bothering people. Although I know it’s related to his autism, I DON’T know how to explain that to others, and I’m not sure where to begin even if they want to help. Most places we’ve been, we stay a few months until an incident happens, and we’re too embarrassed to go back. What is he getting out of this anyway?”

Jeanie and Jason are a combination of many families, and many children.

Many members or former members of faith based communities have shared their experiences with us, and often those experiences were challenging and devastating. This secret of families often comes to light during a family behavior assessment, when we ask about activities they used to enjoy, but no longer get a chance to participate in. One mother started to cry, and shook her head in embarrassment as she described the reactions of others who had seen her child’s repeated, seemingly uncontrollable, tantrums. These events and others had really “turned her off” from trying church with her family again. At the same time, she felt sad, ashamed of stopping taking her family to church, and totally alone.

This challenge may result from the difficulty managing a child’s behavior in the community. But in a church or faith based environment, it is not all up to one parent. This is because the reactions of community members, the organization of the physical environment, and the schedule of church routines, can all contribute to how challenging a child finds it to participate in a service or other church activities.

Do your church members know how to support children with special needs? If you’re not sure, it could help to consider these questions with a core group of parents and leaders, or ask the members of the community.

Do families with special needs come a few times, and seem to drift away?

Do members of the faith community understand that occasionally challenging or loud behaviors may occur unintentionally? Do they understand supportive or non-harmful ways to respond if this happens?

Do adults and helpers understand how to help children feel comfortable who can’t use words to talk?

Do adults and helpers understand how to help students learn the “organization” of church or faith-based routines? Are adults patient? (Can adults understand it’s important to help students build attending skills gradually, instead of expecting someone to be well behaved during an entire service without practice or foundational skills?)

Can adults be flexible? If a new Sunday school student can only sit for 5 minutes without using disruptive behavior, are helpers able to design a more variable schedule and make a safe space for the student to learn the routine?

Is there a quiet safe space students could go to “take a break”?

Are other children supported to learn helpful ways to be a friend to someone with different needs at church?

Do churches provide connections to resources for those who need help navigating large crowds, or who need an alternative to loud music, long periods of sitting still, and potential sensory challenges?

When children come to mother’s day out, day care, preschool, Sunday school, or children’s ministry, those with autism or other challenges occasionally try using unsafe behavior to get what they need or want. Do adults and helpers understand how to keep children safe while building alternative skills?

These questions, and more, can be answered by consulting with a person skilled in both community interactions and behavior based supports of learners with autism, or individuals with other special needs. Some churches find it makes sense to build a volunteer or paid position in which a member acts as special ministry liason. That person, or a core group supporting families in their church, may receive consultation from a behavioral provider or special needs educator with experience in this area. Consultation from a behavioral provider can insure your staff contributes to preventative schedules for individuals affected by special needs. We can assist staff to arrange a supportive environment in which behavior that is perceived as “challenging”, can be minimized while communicative, safe interaction is supported. We can help by paying attention to growing skills of the individual with particular needs. By valuing and growing ONE individual within the faith based community, it can create a safer more harmonious environment for ALL members of that community, and attract more families to a space they can be welcome and minister to others.

This article is part of our “Special Faith” series in which we’ll be exploring topics related to helping family members with special needs, to participate more fully and joyfully within their faith based communities.

In case you don’t have a consulting behavior analyst who does community support in this way, many organizations are currently working in this area of ministry. Check out the links to read about some of those ministries, as well as stories from individuals (including mothers of children with intellectual disabilities, autism, and other challenges) sharing their experience of the church.

http://speaking4sam.wordpress.com/autism-and-the-church/

http://www.autismspeaks.org/blog/2013/06/25/partnering-black-churches-raise-autism-awareness

http://www.christianitytoday.com/women/2011/january/is-your-church-open-to-autism.html

http://dce.oca.org/resource/2087/

http://crossmap.christianpost.com/news/autism-and-the-church-how-to-serve-autistic-children-2482

http://blog.chron.com/sacredduty/2013/04/lakewood-church-expands-ministry-for-children-living-with-autism/

http://thinkingmomsrevolution.com/autism-and-the-church/

Free networking event and presentation for Broomfield providers

06 Thursday Jun 2013

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This announcement comes from our partners at the Broomfield Early Childhood Council: 

“The Broomfield  Early Childhood Council is hosting an event on Tuesday June 18th (6:30-8pm) and Thursday June 20th (12:15-1:45pm) at the Mamie Doud Eisenhower Public Library in Broomfield to learn about the work in health integration and care coordination, along with building partnerships between health providers serving Broomfield children and families.

 
This event will be catered and all are welcome!  Guest presenters are:  Colorado Department of Human Services presenting on the grant application for health integration with an objective to mitigate toxic stress in infants and toddlers; Adam Bean from the Regional Care Coordination Organization (RCCO) presenting on the work of care coordination for Medicaid patients; and Dr. Nancy Greer from Broomfield Pediatrics presenting on the vision and importance of care coordination between local providers and her work to ensure comprehensive care.  
 
This is a great opportunity to network with health providers from all disciplines and understand what the Broomfield Early Childhood Council and health partners are doing to create a comprehensive system of care for early childhood!
 
Please RSVP to jessica@broomfieldecc.org.  Look forward to seeing you there!”

To the parents and therapists on our clients’ teams: What if this was your child with autism?

26 Friday Apr 2013

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Before this child was known to the world as “the girl with autism who expressed unimaginable intelligence”, she was a child who used baffling self-stimulating behaviors and could not speak. She experienced support for YEARS. Her family and team supplied hours of behavior analytic intervention. Her mother describes how hard she worked to keep language in front of her child, literally in front of her by using pictures and words to label household items- all the time. Her family describes how they tried never to give in or give up hope, ALWAYS requiring her to communicate a want or a desire before accessing that thing.

To the parents of my early intervention clients whose children are not yet verbal, whose children’s hands don’t express meaningful gestures yet, whose eyes don’t make sustained eye contact yet,

This is to you:

Have you seen this? Some of you haven’t. You can go check it out for yourself and come back in ten minutes.

Some of you already have. You contacted me and we both watched videos in the comfort of our own homes. There were tears in separate houses that night as we struggled to make sense of this.

My letter is to you, parents who have a child with unimaginable potential that is often unexpressed. My letter is to you, parents who hope and see results weekly but then by Wednesday are daunted by all there is to do, and understand that there is still so far to go. This letter is to you, mothers and fathers who are taking my suggestions literally when I ask you to arrange a therapeutic environment all day.

What can we say about the years of therapy, and how they affected the future person your child will grow up to be?

The girl in the video spoke with incredible intelligence and beauty. At first her fine motor actions looked laborious, and we were not sure if she was being assisted. And then we saw her words across years, settings, situations with someone sitting beside her or not. We, her viewers, watched as with strength and persistence she typed and typed, as long as it took hunting the keys with halting hands. She began to describe her feelings about being in her body, how difficult it was to coordinate her brain and actions, how it felt to experience the sensory world, why she felt she needed to throw her body against a surface… and she joked around with her father. He agonized over this. He has his daughter back. But after all these years… imagine what he went through before her “breakthrough”, before she experienced the behavioral cusp of learning to type, which opened up new worlds of reinforcement—and access to the verbal community. Think of all the years of childhood and adolescence and more than a decade of not knowing she could understand him. How long had she understood language before being able to communicate herself, we wonder.

What made the difference for her?

When this young lady was a little girl, and even as she was learning to type, her family and team of therapists emphasized she needed to use communication before accessing what she wanted. This was not meant to be cruel- it gave her the countless opportunities to practice the experience of expressing what she wanted before she got it. Requiring it every time was difficult, I’m sure. It takes work, every day, to use naturalistic strategies to make SURE a child communicates before accessing things she needs or wants as the day proceeds. Make sure that access to preferred or needed events, is CONTINGENT on a social interaction in which the child requests the event.  Stick to it. Accept only the best approximation the child can make in the moment. Be consistent but also flexible, insuring the child can ALWAYS make a communication attempt during an interaction. (Understand that sometimes a moment is more difficult and there is more going on and you might temporarily accept less than you did this morning, knowing you will come back to the better approximation, and the child will be able to do it. If the child can look and use a word to request his favorite train, but today he is only making a sound, we can accept the sound right now. But in a few minutes we can model “train!” as we hold the train out. As he reaches for the train, wait a moment until he tries to say “train” and deliver the train.)

To support kids that may grow up to use a communication system like typing or an ipad:

We can use contingent access when they are young, to insure that when they are around adults, they get countless opportunities to practice doing something social and communicative, before their environment changes and they get what they want and need.

We need to gently let them know looking at others means good things, not bad things, are coming. We need to remember to say their names when we catch them looking at us or happily playing or engaged, not just when we need something from them.

We need to help expand their worlds, by giving them enough practice to get good at something. Practicing picture exchange once a day or twice a week won’t teach communication. Playing with a toy with your child once a week won’t build strong play skills. It’s not about the hours so much as it’s about the learning opportunities. We can teach our babysitter, the child’s grandparents, the child’s nursery school teacher, the child’s occupational therapist, or anyone- to use therapeutic interaction. Contact us (or your local behavior agency or BCBA) if your team needs more help building in therapeutic learning opportunities throughout the day.

What can we say about the children?

We hear them. We hear that they are hurting and unable to express needs, let alone express all the intelligence and beauty that is inside. We need to help them practice their best way. We need to give them a reason to express.

We want to help. We want to do our best to make sure they learn a communication system that is meaningful to them, that is the easiest to use out of all the options they’ve tried, and that allows them experience new worlds of reinforcement.

We understand that we have to start somewhere, and we know that even if the child learns to type complete sentences one day—we still needed to start here, at early intervention, with measurable units of behavior and communication that we can see changing daily.

We want to be consistent for them. We don’t want to hurt, but to support. We want to give them a way to express their pain, suffering, joy, needs, ideas. We need them to know how meaningful language is, and we have to be diligent and not give up when it’s hard.

When they’re hurting or hurting themselves, we want to find a way out. We need them to learn how to access that way out through appropriate behavior that doesn’t hurt.

When they’re not able to express what they need to, the way WE think they need to express language, we need to find other options. These other options need to be things that don’t hurt others or themselves.

We need to collaborate with therapists and families to give our best shot at developing your vocal skills, fine motor skills, and gross motor skills, so you don’t find it as effortful to communicate whether you use sign, speech, or an augmentative device.

And we need to keep trying.

To the kids, to the students, and to the adults who have not yet found their voice:

We must keep trying. You’re trying too, and we see how hard you’re working. We need to tell you that, when you’re working hard.

We know it takes more out of you than it takes out of us, when you have a meltdown or tantrum. We want to help you not have to use this to be comfortable. We need to develop an interaction language with you, so you can tell us in advance if you really need a break, are having trouble controlling your body, need some help, want to leave, or just feel terrible.

We know that CONFIDENCE makes a big difference. We can see you on the videotapes, Carly, interacting with friends, joking with your dad, introducing Temple Grandin as your idol- we can see you blossoming and we love to see that the cusp of learning to type has given you access to whole new worlds that were closed to you before. But we also see the confidence as you are able to interact with other kids your age, blog and write about helping others, and going on shows like Larry King. You are amazing, and how hard you have to try each time you communicate through typing.

We thank you for your advocacy for others.

We read the comments on your videos and understand not everyone will “get” you. We empathize with you. We see others questioning, judging, and making trite comments without knowing how hard you have to work.

Someone wrote, as you smiled and typed interacting with your therapist, that he didn’t like the way someone was giving you chips as you practiced your hard work.

But we’ve been there, we’ve had to use reinforcement to strengthen a skill that we know we need to strengthen. If there is nothing contingent on using a new skill, we know how easily it is to give up and stop using that skill. We know that you are learning to type for the meaningful access to communicating with others that it gives you, you’re not typing for chips. J But we still snack when we’re working on a book we’re writing…

We thank you for providing your perspective on how it feels. How it feels to use eye contact, use self stimulatory behavior, or struggle to type.

You are an example, a model, someone in the world that others look up to. And thank you for talking to us, Carly. What a gift you have given.

To the parents:

Thank you for your persistence.

Never give up. 

What’s next? Join local agencies for events and trainings—often free!

19 Friday Apr 2013

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What: Cusp Emergence is joining IBHS for an upcoming FREE education and networking event for families that will recur monthly at the Imagine! John Taylor Conference center  In Lafayette. Stay tuned for more information! Meanwhile, check out some other events in our area:

What: Free training in Person Centered Thinking, courtesy of Imagine! Innovations.

When and Where: Wednesday 4/24/13 or 5/29/13 at 9-12 pm at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

Find out more: Click here for a link to other Imagine! Events and scroll down to the date you want to attend.

What: Free presentation on Autism 101: An Introduction to Understanding Autism, courtesy of IBHS (Imagine! Behavioral Health Services) and ASC (Autism Society of Colorado)

When and Where:  Friday 4/26/13 at 10-12 at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

Find out more: Click here for a link to other Imagine! Events and scroll down to the date you want to attend. RSVP is required.

What: All-day seminar on Empowering Families (Topics including post-diagnosis, effective communication, collaborative problem solving).

When and Where: April 27 9-4pm at Rainbow Community Center at 2140 East 88th Ave, Thornton CO, 80229.

Find out more: Contact KimNichelle Rivera at 866-213-4631 or knrivera@empowercolorado.com

What: Workshop for understanding sexualized behaviors in teens with intellectual disabilities

When and Where:  Friday May 3, 2013 from 1-4:30 pm at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

What: Free class on Building Cooperative Behaviors

When and Where: May 14 at 8:30-1:00 pm at John M. Taylor Conference Center, 1665 Coal Creek Drive, Lafayette, CO 80026

Find out more: Click here for a link to other Imagine! Events and scroll down to the date you want to attend. RSVP is required.

What: Walk for Autism with Autism Society of Colorado

When and Where: June 9, 2013 at Infinity Park in Denver (Glendale)

Find out more here

 Still looking for more? More events  on the Imagine! Calendar include parent empowerment workshops, presentations from the Colorado Guardianship Association on Medicaid, and a symposium on caregiving and aging, all in May.

http://www.imaginecolorado.org/Calendar.htm

Learning more each year about autism

03 Wednesday Apr 2013

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Just in time for Autism Awareness Day yesterday, a new article highlighted ten things we didn’t know last year about autism. At Cusp Emergence, much of our contact is with families of young children who are either newly diagnosed, are in the early stages of treatment, or are transitioning to school placements. We are challenged by these findings daily, and we need to find new ways to help families and providers make the most of early years. You can link to the original article here. Below are some of the findings, with links to the source article for each. 

“1. High-quality early intervention for autism spectrum disorder (ASD) can do more than improve behaviors, it can improve brain function. Read more.” 

The study above examined ESDM (Early Start Denver Model) at 20 hours per week of therapy. Earlier this year we linked to additional evidence showing effects of pivotal response therapy, another set of behavioral interventions, on brain activity.

“2. Being nonverbal at age 4 does NOT mean children with autism will never speak. Research shows that most will, in fact, learn to use words, and nearly half will learn to speak fluently. Read more.”

Many students whom we have been fortunate to support, have gained language after intervention, after histories involving long-term periods of nonverbal communication.

More importantly, virtually ALL learners can make progress in functional communication, when the functions of their difficult behavior are carefully examined in the context of a strengths-based assessment. For an individual student, we discover what she needs and wants to communicate, and therapy then expands her access to, and engagement with, the world around her.

Why is it so important that we understand ALL learners can make progress with functional communication? Because it is so important to keep trying, to not give up. Years ago in a robust metroplex school district, I was an undergraduate, un-schooled, interventionist level trainer assistant for special education teachers participating in an ABA training. My first task seemed daunting: approach a student in the corner, sitting in a wheelchair alone, to discover whether she had a communication system at school, how she used it, and determine how to support teachers moving forward. This beautiful high school student remained belted in her chair looking vacantly off to one side most of the time, without a PECS system or vocal or verbal repertoire that the teachers knew of. As I built rapport with her, pairing myself with her favorite songs as we sat together in her loud classroom, I noticed she moved her hands a few seconds after I moved mine. I was practicing some basic signs as I attempted to establish communication with her. After a few minutes I noticed she was moving her hands “intentionally”, and that the signs she was making looked sort of like mine! At least, they were shape-able. We began to teach her basic signs for “music” and “eat”, and within the first week of our summer training, her teachers and paraprofessionals were struggling to grasp that this whole time, after years of sitting in her wheelchair not using expressive language, this 15 year old student was capable of sign language to communicate at least 5 basic requests. Was she capable of this the whole time? She had not used much problem behavior and, the teachers readily admitted, was not “a squeaky wheel” and did not demand much attention. 

“3. Though autism tends to be life long, some children with ASD make so much progress that they no longer meet the diagnostic criteria for autism. High quality early-intervention may be key. Read more.”

All students can learn. And when learning starts early, we often get farther!

How do you meet diagnostic criteria? By acting and behaving in ways that are consistent with the diagnostic criteria. Currently, there are no reliable biomarkers or blood tests that denote “having autism” or show where someone is “located” on a spectrum.

But while this fact is indisputable—that some children with ASD do make so much progress as to be “distinguishable” from other children who never met the diagnostic criteria—it is important to support families to understand the true life long path through supporting a family member who may have autism.

It is important to understand that there may always be new challenges that come with development, exposure to new social environments, and learning. As a parent of an 18 year old expressed to me recently, being able to plan for transitions requires being realistic and supportive even when we hoped it would all be over by now. 

“4. Many younger siblings of children with ASD have developmental delays and symptoms that fall short of an autism diagnosis, but still warrant early intervention. Read more.” 

One of the most pressing questions may be, if the delays and symptoms of younger children fall short of a diagnosis but warrant intervention, how do you fund it?

Recommendations:

  • Insure all families and practitioners in your practice or community understand that having an older sibling with autism is a risk factor for the younger siblings. Younger siblings can be referred to early intervention (in some cases, funded by a state fund in which the child can access ABA (sometimes under the label Social Emotional Support), OT, SLP, and other services to prevent falling behind in language development and social interaction.
  • Often, having an older nonverbal model in the home can prevent younger children from using skills that would otherwise emerge sooner. For example, a younger child may imitate the behaviors that result in meeting his older sibling’s needs. The younger child may imitate pulling parents around by the hand, tantruming to access food, toys or attention. The younger child also may not have adequate verbal models. So it is recommended to use powerful strategies for increasing language, with younger siblings of children with autism, even if those siblings  have no diagnosed delays.
  • Families can attend a workshop and learn skills to arrange their home environment to promote language and insure they respond consistently to behavior.
  • When families begin providing expansions and elaborations on every utterance, and using contingent access to help their children learn social interaction as a basic part of getting needs met, younger children who have been slow to develop speech, often start to talk more. 
  • If a family is considering preschool, younger siblings may benefit from a stimulating environment where language promotion and appropriate social interaction is built into the daily lives of the students. Integrated preschools for children with autism and their typically developing peers may be good options for siblings of students with autism, as the skills they practice daily at school, will be useful and powerful in their daily home lives. 

“5. Research confirms what parents have been saying about wandering and bolting by children with autism: It’s common, it’s scary, and it doesn’t result from careless parenting. Read more.”

Recommendations:

  • Families can develop a basic family safety plan that includes preventative environmental arrangements (such as latches near adult height to prevent unlocking and opening doors), preventative teaching, responsive strategies, and the family’s emergency plan. They can follow up by educating community members on their family plan, including appropriate law enforcement agencies and a responsible party in any community environment (a school, a church, a grocery store) their family member frequents. Pre-teaching can include establishing high compliance with safety instructions such as “stop” and “come here”, by strengthening these skills when it is NOT a crisis, and pre-cuing, prompting, and reinforcing appropriate behavior at all times to keep the family member ready to use safety skills.
  • Talk to your behavior analyst about how to “bring safety behavior under instructional control” and develop a plan for teaching these skills, if you have not addressed them.
  • Even though schools often refuse to initiate a behavior plan for a student with an IEP until there has been demonstrated danger, learn your rights as a parent by consulting with an advocate or reading. If elopement or wandering has occurred in the home or community, demand your student has an appropriate safety and health plan, and behavior plan with preventative components. 

“7. One of the best ways to promote social skills in grade-schoolers with autism is to teach their classmates how to befriend a person with developmental disabilities. Read more.”

If number 5 was one of the more important points for safety, THIS point may be the most powerful one in terms of potential for social interaction.

At a recent IEP meeting, we listened with disbelief to our client’s school team insist a beautiful 3 year old child simply “didn’t enjoy” his peers’ interaction, so they had given up because it was quite difficult to promote interaction. Instead, they had decided to make his school day one that was filled with 1:1 interaction with an adult. In my experience, while it is true that many children diagnosed with autism do not initially “enjoy” interaction with peers, they begin to enjoy it almost immediately when the peer is the one doing the asking! Much research supports peer mediated instruction as one of the most powerful technologies for teaching students that it is fun, useful, and easy to interact with their peers.

Teachers and schools who would like to learn easy techniques for helping peers learn to initiate to their students with autism, can sign up for the School of Play or ask their local behavior analyst for help.

 

Lessons from a Sensory-Friendly Stylist

20 Wednesday Mar 2013

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ImageIn a word, this stylist notices.

 As I sat in her chair and we talked, we learned about each other. She learned that I worked with persons with autism across the spectrum and across the lifespan. She learned that I was interested in her experiences with her own family members and clients with autism.

 And I started to learn more about “sensory friendly”.

 What does she notice? On one occasion, a client affected by autism sat in her chair. She noticed his hot neck, burning up and red, creeping up from his collar to his ears. She gave him a cool towel. He visibly relaxed and softened into his chair. As she provided more and more ways for him to be comfortable in her chair, the stylist also noticed what he was interested in. She shares his enthusiasm for Star Wars and the two discuss it whenever he gets a haircut. She joined with him in discussing something that interested him, and she “took his mind off” the haircut.

He learned to tolerate haircuts in his chair and now occasionally turns down the cold towel.

How important is it to be “friendly” as a business? Maybe it doesn’t seem like a life-or-death situation.

But as any parent whose child screams bloody murder at the mention of a haircut, or a dentist, knows– it feels like it sometimes. And postponing dental work until a child can be put “completely under” is expensive, and doesn’t teach coping skills for going to the dentist through the lifespan. I know many parents who do their child’s haircut in the basement, where no one can hear the screams, and where the sensory stimulation and its fallout is more controllable.

We’re fortunate in the Boulder and Broomfield area to have several excellent pediatric dentists in our area who practice friendly supportive dentistry. There are “sensory friendly” films, and autism supportive places to eat.

How is it in your area?

If you’re a business, is there a small way you can “be the change” you need in your neighborhood?

Thanks, Felicia at Finishing Touch Spa and Salon! 

 If you’re a community member, can you advocate for those small changes and value them when you see them? (The website myautismteam has a provider list and online family network).

Closing comments

“Sensory” and “Behavior” are both misunderstood concepts, especially when people equate “sensory” or “behavior” to something intrinsically negative, or when people use “sensory” or “behavior” as an explanation for something else. When someone says “he had a behavior” or “it was sensory”, we haven’t explained anything.

Perhaps when a behavior analyst pays attention to how a person interacts with his environment, that behavior analyst is interested in the sensing of stimuli.

Perhaps when a sensory friendly teacher pays attention to how a student is affected by sensory stimulation, that teacher is interested in behavior.

The sensory-friendly stylist paid close attention to how her client’s facial expressions, body rigidity, tenseness, nervousness, fidgeting, breathing, and rapidity or fluidity of speech changed when she modified or provided sensory input.

 In a word, she noticed.

Got PRT?

13 Wednesday Mar 2013

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Behavioral intervention can impact brain function! Does your BCBA, school, or home behavior team use PRT?

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Have you heard?

Many of our community partners recently shared the new article on how behavioral intervention for children with autism can impact brain function. But what kind of behavioral intervention was actually studied? This was NOT 20-40 hours of discrete trial therapy per week. No, the children benefiting from behavior intervention received 8-10 hours weekly PRT, or Pivotal Response Treatment. Does your BCBA, school, or home behavior team use PRT?

What is PRT? PRT stands for “Pivotal Response Treatment” or “Pivotal Response Therapy”.

PRT is making news again because of growing evidence that while effecting change in the lives of children, it may also correspond to changes in their brains. But it’s not a new treatment and has been used for decades to support learners with autism. PRT uses the child’s own interests as motivation for learning more. Using PRT, students can learn how to learn from their environments and find social interaction more meaningful. PRT involves using naturalistic, family-friendly, strategies to strengthen skills that are “pivotal” for the child’s development. For example, a therapist or parent may strengthen skills that are critically important in many contexts, such as responding to multiple cues, initiating activities, and making social initiations. Outcomes of targeting pivotal skills include widespread improvement in additional areas of development, including social interaction, communication, and behavior. Ultimately, PRT is a well-studied component of behavior analytic treatment that can be used in natural settings and implemented by family members, and therapists can easily assist families to integrate PRT into their daily activities.

Learn more about PRT

An earlier version of PRT was known as the “Natural Language Paradigm”. Developers of PRT, Dr. Robert L. Koegel and Dr. Lynn Kern Koegel, have consistently produced research showing the effectiveness of strengthening pivotal responses important to social interaction and motivation. To find out more, please see their website (http://www.koegelautism.com/) for information, articles, resources, books, materials, and educational opportunities.

So how are the brains of children with autism changed by PRT? And does PRT take years to show effectiveness?

 Avery C. Voos, one of the lead authors involved in the study, stated: “The cool thing that we found was that these kids showed increased activation in regions of the brain utilized by typically developing kids.” This is consistent with reports of parents of children involved in PRT, who often notice improvements right away as they learn to incorporate the strategies in their daily lives. Corresponding changes in children’s brains likely occur that support the lasting changes in their behavior, but only recently has research directly supported this notion. Voos noted that “[a]fter four months of treatment, they’re starting to use brain regions that typically developing kids are using to process social stimuli.” The study collected information before and after children received 8 to 10 hours per week of pivotal response treatment. Although the study had many limitations, it contributes to a growing body of pioneering research exploring how and why behavioral intervention can have long term beneficial impact. To us at Cusp Emergence, one of the best reasons to use PRT is its social validity and acceptability to the parents and children with whom we’ve consulted.

Bottom Line:

Family members are easily trained in the paradigm by trained professionals or a combination of using manuals and coaching. Workshops in this technique are offered worldwide, but your local behavior analyst is often familiar with these techniques. Know a school, behavior analyst, team or family who could benefit from additional training or consulting to develop their PRT skills or apply them for a particular learner?

Contact us!