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More Neglect at My Brother's NY Residence

One week ago, my mother took my brother Stuart to visit his twin Matthew at the Judge Rotenberg Center in Massachusetts for a long weekend. Due to Stuart's behaviors, my mother had not been able to bring him to see his twin for months. One night my mother called me from the hotel telling me that Stuart's underwear were all ripped. Furthermore, Stuart told her he packed himself and he did not bring enough clothes despite that the staff was supposed to help him pack. Stuart then announced that for months, he only changes his underwear on Fridays, Sundays and Wednesdays, when he showers, and he sleeps with them all night.

We complained to the staff, but could only make progress when my mother came down to his residence today and threw out all his torn underwear, so he would start to wear new ones. After my mother's and my insistence, he is now changing his underwear six days a week. He won't agree to change it on Saturdays.

So for all those so called human rights activists against aversives, where is their outrage about individuals with special needs wearing dirty torn clothes consistently only until a real advocate, in this case my mother, does something about it? Are they too busy complaining about JRC, that they don't have time to tackle real problems?

Autism =30x Emergency Room Visits

According to a new literature analysis which studied 332 articles autism spectrum disorders, 12 of which were specific to emergency room services, found that children and adolescents with autism had up to 30 times as many emergency room visits compared to individuals without autism, (Sarah Lytle, Andrew Hunt, Sonal Moratschek, Marcie Hall-Mennes, and Martha Sajatovic, "Youth with Autism Spectrum Disorder in the Emergency Department," Journal of Clinical Psychiatry 79, no. 3 (2018): epub ahead of print doi:10.4088/JCP.17411506). For individuals with autism, up to 30% of these visits were for psychiatric/behavioral problems compared to 2% for individuals without autism. Furthermore, individuals with autism often had additional visits or were admitted more to inpatient units than people without autism.

Prior to arriving at the Judge Rotenberg Center, my brother Matthew was repeatedly in the emergency room for his head banging and suturing, and finally had an over five month hospital stay. He used to say, "I live at Lenox Hill Hospital." He even once ran into a quarantined area. Now, after receiving intensive applied behavior analysis (ABA) with seven positive behavior contracts, earning reinforcers all day and as needed supplementary skin shock, (last one over five years ago, although he did have to wear the device after at times to prevent escalation of behaviors), he is a new man with a paid job at school and going on trips. His identical twin brother, Stuart, who never had ABA, has also had multiple ER visits and hospitalizations for his behaviors or medication side effects. My daughter Talia, who has had intensive ABA for years to treat her dangerous behaviors, has never been on psych meds, and I have not taken her to an emergency room for about ten years, after we were in a car accident.

As discussed in a previous post, the most common reasons for psychiatric hospitalization in individuals with autism can be treated with ABA.

Let's fund ABA to cut down on these emergency room visits and hospitalizations. The ABA will definitely be cost effective.

Autism Rates Rising and Pesticides

On April 30, the CDC announced that about 1.7% or 1 in 59 children were identified with autism, based on data from 11 communities in the US. Previous estimates were 1 in 150 and 1 in 68. As discussed in previous posts, greener environments are linked to less autism and the chemical Bisphenol A in pregnancy, which the FDA states is safe, is linked to increased autism rates.

A recent study involving 536 children, followed to age 14, shows an association between organopesticide exposure and autism traits, (Sharon K. Sagiv, Maria H. Harris, Robert B. Gunier, Katherine R. Kogut, Kim G. Harley, Julianna Deardorff, Asa Bradman, et al., "Prenatal Organophosphate Pesticide Exposure and Traits Related to Autism Spectrum Disorders in a Population Living in Proximity to Agriculture," Environmental Health Perspectives 126, no. 4 (April 2018): doi:10.1289/EHP2580). Having prenatal metabolites in the urine was associated with poorer social behavior, reported by both teachers and parents. In fact, a ten fold increase in the pesticide metabolites was associated with a 2.7 point increase in the parent-reported Social Responsiveness Scale.

We need to not just treat problems, but to prevent problems to begin with.

Autism, ABA and Exercise: It All Comes Together for My Daughter Talia

A new literature analysis of 20 studies on exercise in autism showed improvement in manipulative skills, locomotor skills, skill related fitness, social functioning, and muscular strength and endurance, (Sean Healy, Adam Nacario, Rock E. Braithwaite, Chris Hopper, "The Effect of Physical Activity Interventions on Youth with Autism Spectrum Disorder: A Meta-analysis," Autism Research (2018): doi:10.1002/aur.1955).

How do we get individuals motivated through exercise? We can do it through ABA. Please check out before and after videos (https://www.facebook.com/ilanaslaff) of my daughter learning to ride a bike/trike on my facebook page. Initally, she needed frequent positive reinforcement with edibles. That has been successfully faded. Notice in the after video, no one is holding edibles in front of her.

Psychiatric Medications, Dementia Risk, and Autism Specific Cognitive Behavior Therapy

Some psychiatric medications which block acetylcholine, a chemical in the brain, that are used to treat depression and anxiety, such as paroxetine and amitriptyline, are associated with an increased risk of dementia according to a published study, (Kathryn Richardson, Chris Fox, Ian Maidment, Nicholas Steel, Yoon K. Loke, Antony Arthur and Phyo K Myint, et al., "Anticholinergic Drugs and Risk of Dementia: Case-Control Study," BMJ 361, (April 2018): doi:10.1136/bmj.k1315). 40,770 patients with a diagnosis of dementia were compared to 283,933 controls, all aged between 65-99. Antidepressants, antiparkinson medications, and medications used for urinary incontinence were linked to an increased risk.

Another recent controlled study showed how cognitive behavior therapy, CBT adapted to individuals with autism, using visuals for example, can help with their emotional regulation and psychopathology, including symptoms of depression and anxiety, (Johnathan A. Weiss, Kendra Thomson, Priscilla Burnham Riosa, Carly Albaum, Victoria chan, Andrea Maughan, Paula Tablon, et al., ""A Randomized Waitlist-Controlled Trial of Cognitive Behavior Therapy to Improve Emotion Regulation in Children with Autism," Journal of Child Psychology and Psychiatry (April 2018): doi:10.1111/jcpp.12915). CBT unlike medications, has no side effects. Unfortunately, also unlike medications, CBT is not often available.

There is a lot of political and professional talk on how care needs to be "person centered" and "patient centered" but unfortunately US education and healthcare are really cutting services centered, profit centered and pharmaceutical centered.