After working in the field for over a decade, I have had the wonderful privilege to meet hundreds of individuals and families living with autism. I have received a lot of questions from concerned caregivers and am sharing share some of the most common ones that I receive.
Q. What is autism?
A. Autism Spectrum Disorder (ASD) is characterized by a number of things. Individuals with ASD may engage in repetitive movements (frequently rocking back and forth, stereotypic hand movements, etc.) or speech (echoing, or repeating what one says, etc.).
These individuals may engage in ritualized patterns of behaviors (touching light switches; closing all doors, etc.), or appear to only function with a rigid daily schedule or routine. They might have a preoccupation with certain items or objects (knowing every part of a washing machine; fascination with calendars and dates, etc.). They may also have atypical sensory interests or aversions (loud noises; crowds, etc.).
One of the hallmarks of autism, however, has to do with social behavior and communication. We typically see deficits in a number of social behaviors including: not being able to engage in social give-and-take, not showing mutual interests in objects or events, not initiating contact with other people, poor eye contact, and lack of or poor language development. It’s important to remember that everyone is unique and that individuals with ASD can have a wide variety of these characteristics.
Q. My two year old is always lining up his toys and walking on his tippy toes. Does he have autism?
A. No, these behaviors alone would not be enough to receive an autism diagnosis. As a matter of fact, for a two year old, these behaviors are pretty typical. As children begin to develop fine motor skills and the ability to walk, they may line up their toys or walk on their tippy toes as a way to explore their environment and experiment with their newfound skills.
Further evaluation or assessment may be needed if your child shows significant social deficits as described in the previous question. Caregivers should start by talking with their family doctor as a first step.
Q. My three year old hasn’t started talking yet. Is this a sign of autism?
A. Children can develop speech at different ages in their younger years. While three year olds are typically talking to some degree, not having speech alone is not indicative of autism. Caregivers should stay in contact with their family doctor and seek out referrals to specialists who may further evaluate the reasons for this speech delay. It could very well just be that your child is moving at their own pace, and will begin talking when they’re ready.
Q. My child has officially been diagnosed with autism. What do I do now?
A. This can certainly be overwhelming news and caregivers may feel lost as to what to do. However, caregivers should not feel alone and know that assistance is available. Some things caregivers should begin to do:
- Get to know autism. Look it up, learn about it, and talk to experts and other families if possible.
- Get to know what resources are available. There are a number of clinicians that provide clinical and behavioral assistance and specialize in ASD in Maryland. You can find a lot of these resources on our website here. Talk to your insurance company and find out what’s available. Even then, there’s a number of funding sources in Maryland that your child may be eligible for. The wait list for these funding sources can be extensive, so it’s important for caregivers to apply as soon as possible.
- Start early intervention now. Early intervention can make the difference between your child learning to talk or not talking at all, being able to socialize with others, functioning independently as they grow older, or even being more comfortable in their own skin.
- Advocate for your child. You may need to advocate for services for your child. Don’t be afraid to speak up. Your child has a right to an appropriate education with appropriate goals. Attend meetings and push for your child’s full potential.
- Join a support group or network with other families who have a child with autism. You are not alone! There are a number of groups in Maryland that have active participants. There are even groups for siblings of children with autism. Join them and connect with others.
- Socialize. If you want your child to join an organized sport then sign them up. Let your child play with other kids at the playground. The more exposure they have to social settings, the more experience they get in developing social skills. Don’t be afraid to talk to the coach, other families, or event organizers to see if they would be willing to work with your child. Chances are that they would be more than happy to include your child in these activities. Likewise, there are a number of specialized events specifically for children with autism. For example, several movie theatres in Maryland have sensory friendly films where potential sensory aversions are reduced and your child is free to make as much noise as they want.
Remember, an ASD diagnosis means that your child may learn and interact differently. Many grow up to have happy and meaningful lives. You don’t have to be alone in this journey. Help is around the corner.
Q. My child is about to become an adult and lose services. What do I do?
A. Caregivers should begin to research resources early on during your child’s teenage years. Don’t wait until your child becomes an adult. Your child may be eligible for additional support and resources from Maryland’s Developmental Disabilities Administration (DDA). Caregivers should start talking with their child’s school and their social worker, if applicable, to determine what steps are needed for a smooth transition into adulthood.
Also remember that as your child becomes an adult you may lose your rights to make decisions for him. If you feel like you need to be able to make medical, financial, and legal decisions for your child then you must seek out legal guardianship of your child. This involves getting a lawyer and going to court and will most likely come with a financial expense. Caregivers should begin to prepare for this option early on if applicable.
Life with a child with an ASD diagnosis can be an amazing journey filled with challenges, hurdles, joy and a lot of happiness. Again, resources on our website can be found here. Do you have more questions about autism? Message Sheppard Pratt Health System on Facebook.
Tom Flis, MS, BCBA, LBA, LCPC, is the Behavioral Services Manager at Sheppard Pratt Health System. Tom is a board certified and licensed behavior analyst and a licensed clinical professional counselor who has more than 12 years of experience working with children and adults diagnosed with a developmental disability.