Recent Diagnosis? Now What?

Dr. T June 7, 2019 0 Comments

If you are reading this, you may have received the news that no one anticipates: your child or loved one is autistic. An Autism diagnosis… now what?

I wrote this article about autism diagnosis because I know what it feels like to hear the words no one anticipates. The following is a list of 7 pieces of advice that will help you to begin your journey to Autism Possible.

But, before you get started, I want you to know that YOU ARE NOT ALONE. An autism diagnosis is the beginning of a new world filled with a tight-knit group of people who understand where you are because we have all started in that place. Get ready to put on your cape because an autism diagnosis is an initiation into the community of superheroes who change the world!

I heard the same words over 10 years ago and still remember that day like it was yesterday. I felt helpless, confused, sad, angry, incompetent and guilty among other feelings that I can’t put into words. I was told to grieve the son I’d never have.

I guess I grieved in my own way at some point, but that doesn’t mean that I still don’t worry about my son and his future. I’d bet you are worried about your loved one’s future too.

Here are the 7 pieces of advice that I wished someone shared with me after our autism diagnosis.

1. Get a second opinion.

If your young child has obtained a recent autism diagnosis, it’s a good idea to seek a second opinion—particularly if the diagnosis came from a source other than a professional with extensive autism experience. Here is a list of professionals who can assess for autism and can give an official autism diagnosis as well as other roles they can play:

Psychiatrists – can also prescribe meds
Psychologists – can do counseling/training
Pediatricians – can also prescribe meds and see for other conditions
Neurologists – can also check for other brain conditions
Clinical Social Workers – can work with families to create a structured environment

Once you get a confirmed autism diagnosis and you are ready to begin the journey to Autism Possible…

2. Start Early Intervention ASAP.

Begin an Early Start program if your child is under three years of age. In Tennessee, where I live, we have a state-run program, which is called Tennessee Early Intervention Service (TEIS). Meet with your state agency and/or school district to set up and begin a home-based program for your child as soon as possible. Special education services are funded and provided through your state agency/school district/Early Start program to help each family that has a child with autism. Simply put, after you receive an autism diagnosis, federal law covers your child’s services to the extent of the law.

Some therapy options include: Applied Behavior Analysis (ABA), Floortime, Son Rise, etc. Other additional therapy options that should be considered are: speech, occupational or physical therapy, sensory integration therapy, and auditory integration training (AIT). Program providers often have a 3- to 24-month-long waiting list! Get on the waiting list for all providers in your area as soon as possible.

It is important that families know and understand that autism is treatable and evidence-based interventions lead to outcomes that are significantly improved (“Autism Society of America: About Autism,” 2008).

3. Take the time you need to get to OK.

I took the time I needed to get my mind together and to understand what I was feeling because I learned that I couldn’t help my son if I didn’t take care of myself. I offer this same advice to you. This process looks different for each of us, so I encourage you to take the time you need to make sense of it all because even if you suspected a disAbility before the diagnosis, actually having the diagnosis can be both highly emotional and a relief: at least that’s how it was for me.

Immediately after my son, Remle, was diagnosed with autism, I had no idea where to start. There were not as many resources as are available today. But even still, information doesn’t help heal a heart. Only time can do that. So, I spent many years researching mountains of overwhelming and hard to understand books, websites, and regulations hoping to find treatments that would work for my family.

Many trials and errors later, combined with my technical background, I continue to research and create statistically effective ways to help families just like ours not only accept, but also feel empowered by the diagnosis. #AutismPossible!

4. Be realistic of the task that lies before you. The Struggle is Real!

I spent what would amount to that of a 30-hour part-time job per week searching online and reading books hoping for anything I could find to help my son. That was on top of actually being a mama and fumbling through the early diagnosis phase.

Knowing how much of a struggle it was to get to a place of hope and empowerment, I decided to complete The REMLE Project: bringing together my personal experience and technical expertise to help families of newly diagnosed loved ones. I hope that the information I share here on the website can help you navigate through the world of autism a little easier and that my experience with treatments and tools can help your family as well.

5. Allow yourself grace to fumble around and figure out what works for you because guess what? You will be Okay!

I’d like to share the most important thing I’ve learned over the past 10 years: You will be okay.

Your family will go through hard times and sometimes you’ll feel like giving up. Other times you will feel angry and you’ll look for someone or something to place blame. But there will also be times of hope and immense pride; especially when your child reaches new milestones and crushes goals! You and your family will go through a roller coaster of emotions. In the end, it will get easier and your family will be okay. You are stronger than you think!

6. Ask a lot of questions–especially of the right people.

Don’t be afraid to ask questions. Be relentless in your question asking, but I would also caution you to stick to asking questions of people who can actually help you find the answers you are in need of. Many times I would ask questions of the wrong people and become frustrated with not getting the right answers and learning this by doing all of the wrong things. Remember WHO you are asking is equally as important as WHAT you are asking.

For instance, if you ask a law-based question in a general support group, you will get all sorts of answers, but if you as a law-based question to a lawyer or someone who is well versed and trained in the law like a special education advocate, you will get the information you actually need more quickly.

As a certified special education advocate, researcher, and mama, I have multiple perspectives that have been beneficial to many families. You probably have many questions after an autism diagnosis, and I would be lying if I said I had all the answers, but because I understand how emotional the days after diagnosis can be, I’ve compiled a collection of questions and answers over in #ASKDRT that will help you get through the first few weeks after receiving the diagnosis. The information is broken into easy-to-understand, bite-sized posts and podcasts.

But this project is not just about me giving you information; I’m here to listen too! I’d love to hear from you and discuss the problems you are facing, or learn new insights you have gained. If you have any questions that I didn’t answer on this website, let me know. Together, we can help empower other families!