You think your child may be affected. Now what?
Do you think your child may be affected by autism? While it’s important to meet with a medical professional to be certain, below you can find information about key indicators and common factors for people affected by autism, as well as information on how to afford the necessary treatment.
Getting a diagnosis: how do I do it and what kind do I need?
Keep in mind that you can begin accessing several services to treat symptoms prior to getting an official ASD diagnosis. Talk to your child’s doctor as soon as possible to discuss your goals for your child and any concerns or difficult behaviors you would like to address.
There are two ways of officially documenting autism spectrum disorder (ASD): a medical diagnosis, and / or an educational assessment. If you wish to have greater access to additional funding sources and private therapies you will need a medical diagnosis. If you wish to receive services through the school you will need an educational assessment. . If you wish to receive BOTH, you must secure both diagnosis’ – not one or the other.
To obtain a medical diagnosis of autism spectrum disorder (ASD) you will need to get an assessment or evaluation from a medical professional or from a medical diagnostic team. You need to secure a referral from your primary care provider (PCP) or pediatrician in order to schedule an appointment with a specialist in diagnosing ASD if your child has a more complex or ambiguous presentation of ASD and your pediatrician or PCP is unable to complete the diagnoses. There are many causes for this type of presentation, for example, having more than one disability, a history of trauma, or being older or younger than your provider has experience in diagnosing. Here in Alaska we have a law, 21.42.397, which sets requirements on most health insurance providers to cover both medical diagnosis and most treatments for ASD.
For younger children you may consider working with a neurodevelopmental pediatrician. Here in Alaska, you can find a neurodevelopmental pediatrician either at the Providence Medical Group Pediatric Neurodevelopment Clinic or through the State of Alaska Neurodevelopmental Outreach Clinics.
Another way to obtain a medical diagnosis of autism spectrum disorder (ASD) is to work with a pediatric psychologist or psychiatrist who specializes in diagnosing ASD in children. A psychologist -- or neuropsychologist -- will often use a series of standardized test such as the Autism Diagnostic Observation Schedule 2 (ADOS-2) or Autism Diagnostic Interview (ADI). The provider may choose to conduct a complete neuropsychological evaluation: to read more about this procedure in general terms you may want to visit the UNC School of Medicine Department of Neurology Neuropsychological FAQ page.
Lastly, you may choose an interdisciplinary team to evaluate or assess your child for autism spectrum disorder (ASD). There are a few options for this in Alaska. Providence in Anchorage has the Providence Autism Diagnostic Network within the Providence Children’s Hospital as well as the Child and Family Developmental Service at SouthCentral Foundation. Please note that the Child and Family Development is open to Alaska Native/American Indians who are beneficiaries of Indian Health Services (IHS). In the Mat-Su valley there is Ptarmigan Connections. These are not the only providers in Alaska. Talk to your primary care provider (PCP) or pediatrician about how to get your child assessed. You can also contact Help Me Grow and ask for help finding a specialist to assess your child.
If you are ready to pursue an educational assessment so your child can receive services at school under an individualized education plan (IEP), you will need to contact either early intervention for children birth to age 3 years, your local public school or your local public school district disability services.
Your local early intervention program can be located through the State of Alaska Department of Health and Social Services Senior and Disability Services (SoA DHSS SDS) Infant Learning Program providers map. You do not need a referral from anyone nor does your child need a diagnosis to access this system.
If your child is between 3 years and 22 years old and still in school, you can contact your child’s school and request an assessment for special education services. This does not require a referral from anyone and there is no financial cost to you. You may want to go to the State of Alaska Department of Education & Early Development (SoA DEED) website and begin to learn about the special education process and your rights.
If you suspect your child may have autism spectrum disorder (ASD) or some other developmental disability, you are probably right and should continue seeking answers even if you find yourself hitting dead ends. Consider seeking advice from other parents; you will find this to be your best source of information. Stone Soup Group has a program pairing parents of children with disabilities with parents who have had similar experiences called MAP or Family Peer Support. You can contact them and request a mentoring family through their website. You might consider joining or starting a Parent Cafe. You might consider applying to become a fellow with the LEND program, a statewide program creating leaders in neurodevelopmental and related disabilities. You can find support resources through the Autism Society of Alaska, the Alaska Autism Resource Center and the Special Education Service Agency (SESA).
Common Factors: Is this autism spectrum disorder?
Autism spectrum disorder (ASD) has been known by many names over the years including Asperger’s Syndrome, childhood disintegrative disorder (CDD), Heller’s syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), or simply autism. If you want to know more about why it is now called ASD and how that change was designed to help families, Everyday Health has a short and clear article entitled Why Doctors Changed the Way They Categorize Autism by Brian Mastroianni.
Autism spectrum disorder (ASD) looks a bit different in every individual. People with ASD may or may not have other diagnosable conditions along with ASD such as a seizure disorder, an intellectual impairment, depression, or no other coexisting condition. An individual who experiences ASD may clearly display symptoms that would be considered as the “classic” signs and symptoms such as lack of eye contact and hand flapping, or may not.
If you are concerned that you or your child may have autism spectrum disorder (ASD) you may wish to read more in-depth about the symptoms. Below is a list of recommended resources for you to check out that are easy to use and written for people who are not in the medical field.
References for learning about the signs and symptoms of Autism Spectrum Disorder (ASD)
The State of Alaska Department of Health and Social Services (DHSS) page has a clear, short list of signs and symptoms of autism spectrum disorder (ASD) as well as links to other government resources.
This National Institute for Mental Health (NIMN) has a wealth of information on autism spectrum disorder (ASD). This particular article defines ASD, lists symptoms, identifies common risk factors and describes the diagnosis process.
Signs and Symptoms of Autism Spectrum Disorders. CDC (2018, April 26)
The Center for Disease Control (CDC) has a plethora of resources and their website is pretty easy to navigate. This particular page details the signs and symptoms of autism spectrum disorder (ASD).
Signs of ASD in Older Children and Adults (2014, April 1)
The presentation of autism spectrum disorder (ASD) can be a little different for older children and adults. This article has a clear list of signs and symptoms of ASD in older children and adults as well as additional resources and a reading list.
• Signs of Autism Spectrum Disorder: What to Look for and What to Do (2015, January 22)
This article details the signs and symptoms of autism spectrum disorder (ASD) as well as a list of additional reading and related resources.
So how do I pay for all of this?
Accessing treatment and service can not only be complex, but expensive. There are ways of mitigating these costs. Here are a few tips:
Apply for Medicaid, called Denali Care or Denali KidCare in Alaska. You can look at the income guidelines for this program to help you determine if this is a good fit for your family.
If your family exceeds the Medicaid income guidelines, apply for TEFRA. TEFRA allows access to Medicaid, called Denali KidCare in Alaska, to some children with disabilities. This is a process that takes a long time. Due to the incredibly long wait times there is a lawsuit that has been filed against the State of Alaska Medicaid by the Northern Justice Project.
Apply for grants whenever you encounter a one-time cost. A one-time cost might be airfare to see a specialist, a piece of technology such as an iPad for a communication system, or a weighted blanket. There are many ways search for and apply for grants. One place to start is the national autism organizations such as:
Apply for social security benefits, either Supplemental Security Income (SSI) or Social Security Disability Income (SSDI) if the individual experiencing autism spectrum disorder (ASD) qualifies. The Autism Spectrum Disorder Foundation does a good job of explaining the types of benefits offered and the process for applying.
Contact a Short-Term Assistance & Referral Program (STAR) navigator by checking the State of Alaska Department of Health and Social Service Senior and Disability Services (SoA DHSS SDS) for a list of the current STAR navigators. The purpose of the STAR navigator is to help you identify and apply for state and federal disability services that you may qualify for. You may contact any STAR navigator on the list regardless of where you reside in Alaska. The STAR navigator is the point of entry for the Home and Community Based Waiver Programs. This, like TEFRA, is a long process with a backlog and waitlist at the state. If you apply for this program, don’t expect a fast turn around time but if you do get access, it could be a life- changing asset to your family.
Understand what your insurance covers and how to maximize your benefits. Here are a few articles that may help you to better understand how to minimize your out of pocket costs: