This article was originally published on 7/30/2016 via LinkedIn.
It continues to shock me that so many parents are having difficulty with their child being evaluated or treated for Autism Spectrum Disorder (ASD). We understand the importance of Early Intervention Services, but this is difficult to receive when mental health professionals are not giving the diagnosis to receive these services. ABA, or Applied Behavioral Analysis is a type of therapy that has been shown to be very effective with children on the Autism Spectrum. But it is quite expensive. And private medical insurance providers only cover a certain percentage of the cost. Medicaid, on the other hand, will cover ABA as long as the child has the proper diagnosis. Now you may be thinking, but “ I make too much money for Medicaid.” And the reality is, there are programs that are run by the state and federal government to assist those children (ages 21 and younger) who have a diagnosis of a Developmental Disability with medical care. And Autism Spectrum Disorder falls under the Developmental Disability Criteria. Thus children who meet the medical criteria for Autism are also frequently able to get Medicaid, even if the parent or guardian “does not meet the income requirements.” These children may also be eligible for Speech Therapy, Occupational Therapy, Applied PE, and Mental Health Services through the public school system. Which is an extensive process, and requires the child to be approved for accommodations. This is in the form of a 504 plan or IEP (Individualized Educational Plan).
Unfortunately this information is not advertised. Nor will it be found in any Autism Resource handbook that I am aware of. It’s very difficult for a parent/ guardian to “navigate the system” when they are not even aware that there is a system to navigate. As a Social Worker, with experience in finding resources. I also have difficulty finding help for others in a system that is so limited. And I can’t fathom how difficult it must be for parents/ guardians who are not familiar with how to effectively advocate for their child. But this is what having a child on the Autism Spectrum forces you to become. You have to become your child’s biggest advocate, because no one else will. It is a developed skill. That requires that you learn to document everything, including names, phone numbers, content of conversations, and emails. Being an advocate, will mean that you have to speak for your child. It will require relentless energy and effort. But the long term results, are so worth it. They honestly are.
It is also important to discuss self care. Parents of children with Autism have a reported divorce rate of 80%, this information was found in the 2007 National Survey of Children’s Health. This study has been questioned numerous times. Another study conducted in 2008, by Wymbs and Pelham (J Consult ClinPsychol. 2008 735-744), found that parents of children with ADHD were 2 times as likely to divorce than the general population. Basically, being the caregiver of a child with a disability is stressful. And it can have a significant impact on all areas of your life. It is very important to take care of yourself mentally, physically, socially, and spiritually. Self care is not selfish.
So if you have concerns that your child has Autism, what should you do? Talk to other parents in your community who have children on the Spectrum. Join chat groups that focus on Autism and Disabilities in your area. Participate in community functions that provide education on Autism. The Autism community is known for helping one another. Because they “get it,” and “have been where you are.” There are also wonderful nonprofit agencies that will advocate with you at no cost, in Louisiana, one such agency is Families Helping Families.
Who can diagnosis your child with Autism Spectrum Disorder? Over 10 years ago, it is my understanding that only Doctors (including Psychologists) were allowed to diagnosis Autism. Thus Pediatricians, Neurologists, Psychiatrists, and Psychologists were the most accepted. Honestly, they still are. However some policies have changed. LCSW’s, or Licensed Clinical Social Workers who have experience in working with children with ASD (Autism Spectrum Disorder) are technically able to assess and treat Autism. Social Workers are competent at assessing children and their symptoms in accordance with the DSM V (Diagnostic and Statistical Manual of Mental Disorders) recommendations (LABSWE, June 2016). However insurance providers, school systems, and medical providers ultimately prefer a MD to diagnose a Developmental Disability. And since this the case, it is best to get a diagnosis from one or more of the physicians listed above.
How should your child be assessed to receive an accurate diagnosis? The CDC on Screening and Diagnosis of ASD, on 08/12/2015 reports that there is not a medical test to diagnose Autism. Instead it is encouraged that your child be brought to an experienced professional who can diagnose based off of a developmental screening and a comprehensive diagnostic evaluation. A developmental screening, screens the caregiver, school system, and child for areas of concern. The evaluation is an intensive review in which the child’s behavior and development is assessed, and this should match the DSM V requirements.
Where should you bring your child to be assessed? A reputable Mental Health Agency or to a Physician who specializes in children with ASD or Developmental Disabilities. Preferably an agency that has a psychiatrist on staff, as they are frequently required to assist with symptom management. And as always, Early Intervention is recognized as the “gold standard” for Autism treatment.
In summary, I am unclear of the emerging pattern of professionals who seem to be discouraging the diagnosis of ASD. There is no known research on this subject. Perhaps because it is a fairly new phenomenon or something that the medical community does not want to recognize. And of course, I would be negligent if I did not bring up the reality of the additional costs that the diagnosis of Autism brings to our country. In March of 2017, the CDC announced that 1 in 68 children in the US have ASD. This is broken into 1 in 42 males and 1 in 189 females. And with that diagnosis, comes the right to unlimited medical care, financial assistance, educational accommodations, respite programs, and many other resources.
Having a child on the Spectrum can be a joyful and beautiful journey. As they say, it’s not about the destination. I hope to continue writing on various topics related to being a caregiver of a child with a disability. As there are many issues and resources to discuss. And unfortunately one post, can not cover them all.
Recommended Resources in St. Tammany Parish, Louisiana for children with suspected or diagnosed ASD:
Flordia Parishes Human Services Authority Developmental Disabilities Office at 985-543-4730. Northshore Families Helping Families at 985-875-0511, Families Helping Families of Jefferson (Main Office), Easter Seals Social Services at 985-892-7604, Lurline Smith Mental Health Center at 985-624-4450, Starc of Louisiana at 985-641-0197, Mercy Family Center at 985-727-7993, Live Oak Children’s Center (Psychological Testing), Dr. William Colomb (MFC Pediatric Psychiatrist), Dr. Frederick Henderson (Metaire Pediatric Psychiatrist ), Dr. Dauphine Glindmeyer (Pediatric Psychiatrist), Dr. John Flatt (Pediatric Neurologist), Michelle Boze, PHD (Pediatric Psychologist), the Social Security Disability Office, the Autism Society of GNO, The Children’s Hospital Autism Center, The Tulane Center for Autism and Related Disorders, SOAR, and the St Tammany School Board (Harrison Curriculum center) at 985-898-3311.
Updated on 9/27/17
Angie Simonton, LCSW-BACS