For parents who receive a new Autism diagnoses, many emotions are felt, such as: Anger, Denial, Fear, Confusion and Guilt. I remember being in denial, and angry at the initial diagnosis I received. However, I had to swallow my pride, get a better understanding of Autism and what it was and determine the next steps to help my child. Below are a few tips to help parents dealing with a new diagnosis of Autism.
1. Relax and let your guard down!
As a registered nurse, I admit I had my concerns when my then 18-month-old son would stop to watch every (and I mean EVERY) car ride by. In my gut, I knew it was Autism but was in denial. Even more so, my husband had a harder time dealing with the diagnosis than myself. He felt as if they were “labeling “ our little one and “demeaning “him. He even made statements such as “ I still believe in my son even if no one else does”. It took some time for him to accept the new diagnosis. Here’s the thing, Autism is a diagnosis just like diabetes, heart disease or obesity. Autism does not “define” or “label” a child. It is just a diagnosis. Having an open mind and accepting the diagnosis for what it is will allow you to move on the next steps in this journey such as, developing an appropriate treatment plan. Because your little ones can’t yet speak up for themselves, they are depending on YOU to take action for what WILL affect their lives later. Remember, whether you choose to address the diagnosis now or later, at some point you won’t have a choice but to. So step up to the plate, put your feelings aside, and do what’s best for your little one! The earlier the intervention, the better the outcomes!
I’ve accepted it now what?
Now that you have come to grasps with your little ones diagnosis, be direct and ask your provider what the next steps are for receiving treatment. Ask if the provider has a Social Worker or Case Manager that can help guide you in the process. This is new uncharted territory for you and you will need as much support as possible and that’s OK. Many insurance companies also have case managers that can help you navigate your insurance plan, coverage and in network providers.
Okay so you’ve accepted the diagnosis and reached out to your social worker now what? Do your own research. This can be as simple as doing a Google search for Autism Support Groups in your local area. Many of these support groups will have additional information, resources and advocacy supports that you may need. In my town, one organization sends out parent starter packets. Its loaded with valuable information including defining Autism, suggested Books and websites, insurance information, Autism specific providers in the area and access to a lawyer for legal needs. It was truly a lifesaver in helping me through this process. Additionally, they offered local events for my little one as well as support groups specifically for caregivers.
Ask about Autism schooling options early on. Some states have Autism specific programs that allow children to attend school as young as 18 months old. It will help save on a daycare bill and help your child start a structured educational and therapy program early on. Trust me when all the other kids are crying when going to kindergarten, your loved one will be a champ! Most children with Autism thrive on routines and this is one you can get in place early on allowing them to focus on learning and not being anxious. Be aware, that in many cases, you can CONTINUE to receive outside services (Therapy & ABA) even if your child is receiving services in school. The school district is responsible for paying for in school services, which allows you to use your insurance or additional resources for outside treatment. It took me 7 months to figure this out and my little one lost valuable learned techniques during his 3-week break in the summer. We are in the process now of picking up outside services and are on many waiting lists.
Be an ADVOCATE for YOUR loved one. Ask questions, seek second opinions if needed and switch providers if you do not agree with their methods or practices; Do your own research regarding the most current treatments and therapies. Remember no degree, research or amount of working experience can alter YOUR understanding or your loved one. While most people with Autism have similar characteristics, each child’s abilities, strengths and weaknesses vary. Speak up if you think goals or treatments plans need to be changed. YOUR voice matters!
Medicaid and Insurance
Check your insurance for Autism coverage. While many states have mandated insurance companies cover a diagnosis of Autism, some do not. This will help you in the long run when it comes to receiving early intervention services such as therapy (Physical, occupational and, speech) and applied behavior analysis (ABA). Apply for Medicaid for you child. While you may think you don’t need it now, chances are you will need it in the future. Children with Autism often qualify for Medicaid based on their diagnosis and other factors that only takes into consideration the income of the CHILD, NOT the parent. Apply and fight for whatever you qualify for. This way if your insurance covers a portion of the a service, Medicaid will often pick up the remaining balance. Lastly, be inconstant contact with your insurances and keep an update list of approved in network providers!
Finally, expose your child to as much as they can tolerate. Sounds, textures, events, people, and places are a few examples. I remember taking my little one to a new playground and he was afraid to get on the equipment because of the kids running and it was new to him. I made a point to take him to different playgrounds after that experience. Even if he wouldn’t get on the equipment I would let him watch the other children play. I would take him at times that were less crowded and allow him to become familiar with the area first and would slowly progress him up to peak times. Fast forward 2 years later and he will RUN to any playground no matter how many children are there! Each child is different so base your exposure plan on your loved ones unique abilities.