WHAT IS AUTISM?

At diagnosis, Autism is a Neurological Autoimmune Disorder that disables an individual from being able to feel and communicate where their body is in space. 

Moreover, some verbal have said it is a constant feeling like they are falling or feeling like a fish out of water; which makes them unable to communicate and process what they need, see, hear, taste, smell, and feel unless they are:

• In a back-and-forth movement.

• In a space that provides feedback of where the ground, walls, and ceiling are.

• Covering themselves and or their environment in water, bubbles, dirt, or sand, (sensory) etc.

• Hyper-focused on an activity that has a clear beginning and end (lining things up, watching movies from very beginning to the last credit, routines, therapy sessions).

• Landing a jump.

• Dropping things to know where the floor is.

• Throwing things around themselves to know where the floor is.

• Putting things on their head to know where their head is.

What does autism look like, pre-therapy, or when they do not have the above options?

•· Excessive and repetitive biting self or others 

• Excessive and repetitive head butting

• Excessive and repetitive hitting

• Excessive and repetitive head slamming 

• Excessive and repetitive body slamming 

• Excessive and repetitive jumping off things

• Excessive and repetitive bolting off 

• Excessive and repetitive teeth grinding

• Excessive and repetitive self-harming

• Excessive and repetitive wrapping self in things 

• Excessive and repetitive ingesting non-food items

• Excessive and repetitive motion

• Excessive and repetitive spinning

• Not sleeping more than 45 minutes a night

• Excessive and repetitive eating 

• Excessive and repetitive echolocation throwing heavy objects and or screaming and or clapping

• Requires 24/7 care and intervention 

Statistics:

According to http://Autismspeaks.org, Drowning Prevention Coalition, National Autism Association, Pediatrics: Elopement and Wandering:

Nationwide, 1 in 36 children are diagnosed with autism.

Worldwide, it is estimated that 1 in 160 people have autism. 

Autism is expected to grow 800% by 2030.

Florida has the second highest Autism population in the world.

49% of children with autism wander/bolt/elope.

Dangers associated with wandering include drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization, and assault. 

91% of autism deaths are from bolting off and drowning. 

29% of wandering happens from a school.

62% of autism families of children who wander were prevented from attending/enjoying activities outside of the home due to fear of wandering.

32% of parents have reported a “close call” with possible drowning due to bolting/wandering.

Florida leads the country in drowning deaths of children ages 1-4. Annually in Florida, enough children to fill 3 to 4 preschool classrooms drowning before their 5th birthday. 

In Palm Beach County, adults aged 20-25 have the highest drowning rate based on population, followed by seniors 75+ and children ages 1-4 from 2016-2019. 

Palm Beach County averages 48 drowning deaths per year. 

Two out of three parents of autism children have reported a “close call” to traffic injury due to bolting/wandering.

Wandering was ranked among the most stressful autism behavior by 58% of parents of wanderers.

Why Do Children with Autism Wander, Bolt, or Elope?

Children with autism typically wander or bolt because they cannot feel where their bodies are in space, so they run until they find something that helps them feel their body, which is why drowning remains the leading cause of death for autism children under the age of 14.

Solution:

Step 1:

Provide an environment that wanderers/bolters/elopers can safely feel their body in through 

proprioceptive and vestibular therapies, otherwise known as a Respite Pod. 

As a parent of a child who wanders/bolts unless we do proprioceptive and vestibular therapy daily, 

I can say that the Respite Pod is essential in providing children and adults with Autism, a lifelong resource to safely regulate them, whereas the therapies they do, although they help tremendously, they will eventually outgrow them, and they are not available everyday every 3 hours as needed. 

Since Autism is a lifelong disability journey, those who have it need a Respite Pod in their home and in their community to be accessible to them for a lifetime, otherwise their bill of rights for persons with disabilities is being violated.

Bill of Rights for Persons with Developmental Disabilities

Excerpted from 393.13, Florida Statutes, entitled “Treatment of persons with developmental disabilities”

(a) Persons with developmental disabilities shall have a right to dignity, privacy, and

humane care, including the right to be free from abuse, including sexual abuse,

neglect, and exploitation.

(b) Persons with developmental disabilities shall have the right to religious freedom

and practice. Nothing shall restrict or infringe on a person’s right to religious

preference and practice.

(c) Persons with developmental disabilities shall receive services, within available

sources, which protect the personal liberty of the individual and which are provided

in the least restrictive conditions necessary to achieve the purpose of treatment.

(d) Persons with developmental disabilities shall have a right to participate in an

appropriate program of quality education and training services, within available

resources, regardless of chronological age or degree of disability. Such persons

may be provided with instruction in sex education, marriage, and family planning.

(e) Persons with developmental disabilities shall have a right to social interaction and

to participate in community activities.

(f) Persons with developmental disabilities shall have a right to physical exercise and

recreational opportunities.

(g) Persons with developmental disabilities shall have a right to be free from harm,

including unnecessary physical, chemical, or mechanical restraint, isolation,

excessive medication, abuse, or neglect.

(h) Persons with developmental disabilities shall have a right to consent to or refuse

treatment, subject to the powers of a guardian advocate appointed pursuant to s.

393.12 or a guardian appointed pursuant to chapter 744.

(i) No otherwise qualified person shall, by reason of having a developmental disability,

be excluded from participation in, or be denied the benefits of, or be subject to

discrimination under, any program or activity which receives public funds, and all

prohibitions set forth under any other statute shall be actionable under this statute.

(j) No otherwise qualified person shall, by reason of having a developmental disability,

be denied the right to vote in public elections.

The intention of this article is to be informational and to speak up for those who cannot speak due to disability or due to overwhelming caregiving/intervention hours. 

All information in this article was gathered over the last five years of personal observation of severe autism intervention and research on what Autism is to prevent my son from continuing; bolting, self-injurious behaviors, property destruction, and aggression at home, school, and public places.

Statistics and other information from:

http://Autismspeaks.org, Drowning Prevention Coalition, National Autism Association, Pediatrics: Elopement and Wandering, Accessing the Healing Power of the Vagus Nerve. 

Any information or guidance we provide is not a substitute for the consultation, diagnosis, and/or medical treatment of your doctor or healthcare provider.

You must not rely on any information or guidance we provide you with as an alternative to medical advice from your doctor or healthcare provider and we expressly disclaim all responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered by you or any third party as a result of your reliance on any information or guidance we provide you with.

If you have any specific questions or concerns about any medical matter, you should consult your doctor or healthcare provider as soon as possible.

If you think you may be suffering from any medical condition, you should seek immediate medical attention from your healthcare provider. Do not delay seeking medical advice, disregard medical advice or discontinue medical treatment because of information or guidance we provide you with.

Nothing in this disclaimer will limit or exclude any liability that may not be limited or excluded by applicable law. 

These products are not intended to diagnose, treat, cure, or prevent any disease.

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