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Ilene Schwartz in The Seattle Times: We owe more to kids with developmental disabilities

Not aloneNote: We've all heard (and told) story after story of how once our kids were diagnosed, we were on our own. There is no autism GPS.  My kindly pediatrician gave me a contact phone number for Early Intervention.    There was a DAN! doctor miles from my house successfully treating the medical aspects of autism. I never knew he or his brand of medicine existed until years later. I felt my way blindly hoping to come upon the intervention or treatment that would help. Below is an article that accurately depicts that nothing has changed for families.  I see it here in Connecticut. Young Moms wait months and months to get into the Yale Child Study and then..... they call early intervention.  Lucky are the few who find a TACA or NAA chapter and get started with help from parents.  This is our raison d'etre, long after social  media has taken over the soundbite world of communication. Parents are not alone. Not you. Not me. Kim

By Ilene Schwartz
Special to The Times

In June 2019, I was diagnosed with Stage 1 Breast Cancer. I worked with an amazing team of providers and luckily have an excellent prognosis for full recovery. The time from my first suspicious mammogram to an appointment with an interdisciplinary cancer-care team was five weeks. I am grateful for the care that I received and thankful to the staff at University of Washington Medicine and Seattle Cancer Care Alliance for making a difficult situation as easy as it could be.

Of course, I am well aware that the timeliness and quality of my care is due in part to the privilege of being a well-educated, white woman with outstanding medical insurance. It is also due to the privilege of my disease: breast cancer is a disease that people talk about, walk for, and wear and buy pink products to support treatment, awareness and a cure. And for the most part, its treatments are covered by medical insurance.

Throughout this process, I have been thinking about families that I work with who experience a very different journey through diagnosis, accessing treatment and patient navigation. As a board certified behavior analyst, I work with young children with autism spectrum disorders and related disabilities. The pathway that these families travel to get a diagnosis and then to find and pay for necessary educational, medical and therapy services differs from my experience across almost every dimension: My pathway was well defined with multiple road signs along the way; theirs is vague and disjointed, full of unexpected detours and hazards. But it does not need to be this way. The diagnosis, treatment and patient navigation for children with autism spectrum disorder and related disabilities could be improved if institutions worked together and these services were adequately funded.

Once a family suspects that their young child has a developmental delay, their first stop is often their pediatrician. The importance of development during the first five years of life is well documented, yet many parents with developmental concerns about their children are still told to take a wait-and-see approach. From the time parents first share concerns about their child’s development until they get a diagnosis, the average wait time is 1.7 years. For parents of color or who use Medicaid or are uninsured, these waits are even longer.

After the diagnosis, their wait continues. Parents are told that early, intensive intervention is important. The reality is, however, that this evidence-based service is not readily available. Families report long wait lists for services that the professionals tell them are essential to facilitate their child’s development. At the same time, parents are struggling to attempt to make sense of the maze of providers, agencies, recommendations and information.  READ MORE HERE.

Comments

Shelley Tzorfas

From working in this arena for more than 2 decades I can say that it is Not doctors, Universities, Clinics etc that gets Autistic kids significantly turned around-rather its parents guiding other parents particularly the moms in the field.

Nicole

Sadly, pediatricians are typically of no help. Contacting a MAPS doctor as soon as a parent suspects something is key, then starting intervention as early as possible with focus on diet (healing the gut) and detox. Metals like mercury and aluminum in the vaccines inhibit the bodily enzymes that break down gluten, casein, and soy. These proteins actually contain OPIOID fragments and if they are not digested properly, opiate molecules are activated in the body! Think about the symptoms of autism and compare this to a toddler potentially affected by opiates. How many times have we described children with autism as being "in a fog". The opiate proteins in these foods are known as casomorphin (in casein), gliadorphin (in gluten) and soymorphin (in soy). Notice the word morphin(e) in two of these terms.
Detox is crucial to get the body and nervous system working properly again. This can be done safely with guidance from a MAPS doctor, such as Vit. C, magnesium, and zinc, and helped along by purified fish oil, and probiotics. Safe amounts given consistently can have a remarkable result over time. The diet especially creates a bridge of safety until the body can detox and heal, so eventually a normal diet can hopefully be returned to. Also, early intervention like AVB-applied verbal behavior, and RDI-relationship development intervention, can make up for lost learning and keep the child moving forward while his/her body is healing.

Bob Moffit

It does not help our children when the largest, well-known, well-funded organization.. AUTISM SPEAKS … has prioritized AWARENESS of autism over all other aspects .. such as .. identifying the cause and improving treatment .. their ONLY contribution to children and families is the establishment of AUTISM AWARENESS MONTH … a month-long "LIGHT IT UP BLUE" advertising .. fun raising .. campaign.

Just watched a pitiful interview on Foxnews .. comprising of a woman "reporter" (?) .. interviewing six women .. all moms with young elementary age school children expressing their greatest concerns for the next Presidential election. It was frustrating watching entire panel and host talking passionately about the health of their children … how important it is to have the right to choose proper health foods and behaviors for their children. All agreed having access to EDUCATION for their children CRITICAL to raising them .. all agreed the "scare-mongering" swirling around the Coronavirus not helpful to anyone .. all they want is ACCURATE AND TRUE INFORMATION without all the POLITICAL GAMESMANSHIP going on.

Predictably the subject of MANDATORY VACCINES .. DENYING PARENTS THEIR RIGHT TO INFORMED CONSENT .. OR HAVE THEIR CHILDREN DENIED ACCESS TO PUBLIC SCHOOLS .. SUPPOSEDLY TO PROTECT OUR COUNTRY FROM THAT DREADED YEARLY OUTBREAK SCOURGE OF MEASLES … WHICH EVERY YEAR IS PORTRAYED AS FAR MORE DANGEROUS THAN CORONAVIRUS.

VACCINES … THE ONE ISSUE THAT NO ONE CAN SPEAK ABOUT....

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