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Severe Autism, Fetal Alcohol Syndrome and ICF Care

"Ultimately, a 4,500% increase in autism caseloads over the past several decades 

should be front-page news…"

Public comments from Kennedy Krieger Institute psychiatrist Dr. Lee Wachtel to the IACC (Interagency Autism Coordination Committee - a federal advisory committee on autism 01/17/18)


Second, the IACC (Interagency Autism Coordinating Committee) must promote a CHOICE BASED APPROACH to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population.


Autism Statistics


The statistics are grim.  Autism is a catastrophic epidemic.


Prevalence in the United States is estimated at 1 in 54 births. (CDC, 2020)


More than 3.5 million Americans live with an autism spectrum disorder. (Buescher et al., 2014)


Prevalence of autism in U.S. children increased by 119.4 percent from 2000 (1 in 150) to 2010 (1 in 68). (CDC, 2014)


Autism is the fastest-growing developmental disability. (CDC, 2020)


Prevalence has increased by 6-15 percent each year from 2002 to 2010. (Based on biennial numbers from the CDC)

California is the bellwether State for autism statistics due to the mandates of California's Lanterman Act.

California Autism Prevalence Trends from 1931 to 2014 and Comparison to National ASD Data from IDEA and ADDM - Researchers Cynthia Nevison, Mark Blaxill & Walter Zahorodny published in the Journal of Autism and Developmental Disorders volume 48, pages4103–4117 (2018)

“Across birth cohorts…CDDS autism prevalence has increased by a factor of 25 from birth years 1970–2012 and by a factor of 1,000 from birth years 1931–2012”—representing an “all-time high” [emphasis added].


Even more alarming, a new report Autism in California 2020, A report to the public Commissioned by the

Autism Society San Francisco Bay Area

Based on California Department of Developmental Disabilities data shows a 4,300% caseload increase in 35 years


Read the following from NCSA by President Jill Escher:

Is the Autism Surge Real or a Mirage? There's an easy way to find out

https://www.ncsautism.org/blog//cpp-study-autism


Accept This:  Three Terrible Truths About Autism

https://www.ncsautism.org/blog//acceptthis-three-terrible-truths-about-autism


Nationwide, an estimated 827,000 autistic adults presently are being cared for by family members who are 65 or older and this number is expected to increase at least 20-fold in the next 30 years by conservative estimates.  This is a highly unstable situation as caregivers age, become chronically ill and  even die, where will these autistic adults live?


Characteristics

of

Severe Autism

Fetal Alcohol Syndrome

 The current diagnostic manual (DSM-5) provides three levels of autism, with more support required at each level.

Severe autism can be much more debilitating and challenging than other types of autism.

It is not unusual for a person with severe autism to require 24/7 support and supervision.

Symptoms of Severe Autism can include:

  • Speech and language challenges - difficulties with articulation, seem to ignore people around them
  • Sensory Dysfunction- too sensitive to lights, sounds, taste, touch and smell to the point where they find  crowds, lights, hugs and loud noises overwhelming
  • Cognitive Dsyfunction - low IQ or  functionally low IQ with "splinter" skills - adept in some areas but deficient in other common life skills
  • Repetitive and Self-stimulatory Behaviors- such as hand flapping, rocking, repetitive sounds or speech, finger flicking
  • Physical Symptoms - epilepsy, gastrointestinal disorders, insomnia, late sleep onset, early morning awakening, and poor sleep maintenance; sleep disturbances are present in 53–78% of individuals with ASD
  • Self-injurious behaviors - head banging to the point of detaching their own retina's, biting themselves until bleeding and scarred
  • Aggressive Behaviors - hitting, spitting, biting, kicking at others, tantrumming, door banging, fecal smearing, putting heads and hands through glass windows, ripping light fixtures out of ceilings and walls, punching holes in walls, throwing furniture and appliances
  • Wandering & Elopement - running away with no particular destination, sometimes into dangerous situations, like running into the highway or jumping into ponds and rivers, getting lost in the woods.
  • Rigidity, Inflexibility - overwhelmed and upset by any changes in the environment, needing a stable, consistent environment
  • Inability to Generalize - unable to take skills or learning experiences from one environment to another

CO-MORBID PSYCHIATRIC DISORDERS

Overall, co-morbid psychiatric disorders, (such as schizoaffective disorder, bipolar disorder, anxiety and depressive disorders) were between 2-14 times more common in adults with ASD compared to adults with neither diagnosis. 


Adults with ASD were about 14 times more likely to have schizophrenia than adults in the general population


As many as 85% of children with autism also have some form of comorbid psychiatric diagnosis, and 35% are taking at least 1 psychotropic medication as treatment. ADHD, anxiety, and depression are the most commonly diagnosed comorbidities, with anxiety and depression being particularly important to watch for in older children, as they become more self-aware.


FETAL ALCOHOL SYNDROME

Overlap Between Autism & Fetal Alcohol Syndrome


Autism and fetal alcohol syndrome often share many of the same traits. Both are neurodevelopmental disorders that lead to difficulties socializing, learning, communicating, and with motor skills.


These conditions may be comorbid, as people with fetal alcohol syndrome show autism traits nearly three-quarters of the time. FAS is often mistaken for autism spectrum disorder.


Some of the overlapping traits for autism and fetal alcohol syndrome include:

  • Difficulties socializing and with social communication skills.
  • Trouble making and keeping friends.
  • Attention deficits.
  • Slower development.
  • Impulsivity and problems understanding consequences.
  • Avoidance of eye contact.
  • Difficulties with transitions.
  • Sensitivity to touch.

  • Issues regulating emotions, leading to mood swings and/or temper tantrums.
  • Being exceptionally skilled in one specific area or field


Differences between fetal alcohol syndrome and autism can be observed. For example, children with FAS are often more interested in their peers and have more of a desire to be social.

 Children with autism tend to prefer to play alone, often with little to no interest in their peers.


Those with fetal alcohol syndrome report feeling different from others.


Issues Related to Fetal Alcohol Syndrome


Fetal alcohol syndrome, like autism, is a spectrum disorder. The level of severity and disability can range greatly from person to person.


In addition to the autism-like traits already listed, some of the issues related to FAS include:


  • Low birth weight.
  • Smaller than average stature.
  • Distorted facial features.
  • Poor coordination.
  • Attention deficits.
  • Hyperactivity.
  • Memory issues.
  • Learning disabilities.
  • Low IQ.
  • Sleep disturbances.
  • Difficulties sucking as an infant.
  • Heart, bone, and kidney problems.
  • Language and speech delays.
  • Hearing and vision problems.
  • Depression later in life.

Features of ICF Care


The operation of congregate care facilities such as the Intermediate Care Facility (ICF) level of care lends itself beautifully to meet the long-term residential services and supports needs of behaviorally challenging syndromes such as fetal alcohol syndrome and severe autism.


Behaviorally challenged autistic and FAS individuals crave consistency and stability, and predictable scheduling and the ICF offers a consistent, stable environment, staffing and scheduling that are ideal in meeting these vital needs.   The ICF offers the on-the-premises medical and behavioral expertise that are lacking in "Community" services.


ICF's are built with sensory muffling features such as thick walls, plexiglass on the windows, line-of-site architecture for the staff, safety furniture that cannot be thrown and broken, tv's are built behind plexiglass safety panels,  and lighting is designed to be soothing.


Justly compensated direct care staff are supported in their difficult and challenging work by the on-site professional treatment teams of supervisors, behaviorists, psychiatrists, doctors, nurses, psychologists and therapists who they can turn to in times of behavioral crisis.


There are many watchful eyes on campus to provide a safe haven for residents, unlike the greater community where 1 in  5 autistic adults interact with the police and are at great risk because of their naivete and communication difficulties.  Research shows that disabled individuals are more than twice as likely to be victims of crime than those without disabilities.


On-site campus amenities such as pools and gymnasiums are available for behaviorally challenging residents who would otherwise be denied access to public pools and gyms in the community because of the unpredictability of their challenging behaviors.


Structured on campus programs, activities, parties and celebrations give  residents many opportunities to socialize.  Schedules are structured and predictable.  Staff is consistent and reliable.


On-site workshops give behaviorally challenging residents a safe, caring, understanding work environment and opportunities for employment that are denied to them in the community because of the unpredictability of their challenging behaviors.


ICF's offer the stable, consistent environment that is not found in the "community".


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