A guide to handling your child’s diagnosis of autism

According to the CDC, 1 in 54 children born in America is diagnosed with Autism Spectrum Disorder (ASD) by the age of 8.

 

Autism is a developmental disability that affects communication, social interaction, and behavior in children. ASD is a spectrum, which means every child diagnosed is affected differently by autism. There are some neurological symptoms of autism that affect digestion, fine motor skills, and speech.  Nobody knows what causes autism, and there is no real cure for it.  Thanks to recent autism research, several therapies have been proven effective in managing symptoms of autism. 

 

So, what happens if your child is diagnosed with autism? You hear the word, and you are instantly in shock, followed by a sea of emotions. Panic sets in, and you can feel completely lost and hopeless in the first moments of hearing the news.

 

However, millions of parents have walked the path ahead over the years - and there is a clear route that will bring your child a good quality of life, health, and a promising future.

 

Here are a list  of the first things you should do when you receive your child's autism diagnosis.

 

Typically, parents will receive the news of the diagnosis of their child’s autism from their doctor or through the school system. It is essential to understand that autism diagnosis is not full proof.  It is a developmental disability that manifests itself differently with different children. There have been false-positive cases in the diagnosis of autism in the past.

 

Therefore, it is essential to confirm the diagnosis from professionals and experts who have been researching autism as one of their specialties.  Ask for determination by a developmental pediatrician and a neurologist who specializes in autism. Seeking triple confirmation is not uncommon.  Diagnosis of ASD will significantly alter you and your child's future, so asking for validation of diagnosis is essential.

 

 

You will be your autistic child’s biggest advocate, cheerleader, and the team leader of the team of professionals who will help your child live his best life with ASD. You will need to be in a positive headspace when you embark on this journey.

 

So, it would help if you allow yourself some time to absorb the news.  The feelings you will experience in the first moments of hearing the news are all valid.  The entire future you had envisioned (often based on your own childhood experiences) has been upended.

 

Allow yourself the time to process those feelings.  Seek help from your therapist if you need help in processing the emotions.  So, permit yourself to absorb the news and handle it.

 

 

Once you have processed the news and have gotten confirmation on the diagnosis, it is time to start researching autism.  As mentioned before, you are not alone in this journey.  There are an entire community of parents, professionals, therapists, researchers, and organizations in autism.

 

Fortunately, for us, we live in an era of information being at our fingertips.  Start researching online resources.  Read about ASD and get a clear understanding of what it is that your child has.  Seek out blogs, forums, websites, social media support groups and join them.

 

Many organizations have published valuable resources online for parents of autistic children.  Check out Autism Resources for families for some support for parents of children with ASD. 

 

 

Autism therapy involves several specialists and professionals - from developmental pediatricians, biomedical experts, dieticians, speech therapists, etc. However, accessing these professionals can take time.  There is often a waitlist that you will have to join.

 

Many states have programs for early intervention of autism that have organized these professionals to help with autism therapy.  They, too, have waitlists and a detailed process of joining.

 

In the early days of diagnosis, take an hour to enroll your child to the waitlists and programs. Doing this will save valuable time in accessing these services.

 

Autism Speaks have a 100-day kit with helpful resources for you that will help with identifying these experts and join the lists and programs.

 

 

Autism is a disability, and with that comes exclusive rights for people with disabilities that allow them access and accommodation to services, funding, and special needs programs.

 

The world of autism can seem daunting, but it all will come together if you familiarize yourself with your child's laws and rights.  Learn about IEP (individualized education program), IDEA (individuals with disabilities education act), EI (early intervention), FAPE (free appropriate public education) act.

 

The more you learn about your child’s rights, the more resources you will have access to and potentially receive the government assistance to help with the therapies. A good place to start is here.

 

 

If you haven’t already done some financial planning when you started a family, now is an excellent time to start.  Autism therapies have plenty of out-of-pocket expenses, and insurance co-pays will only cover so much.  Every parent wants to give their children the best care without worrying about the cost of the therapy.  Every parent wants to give their children the best care without worrying about the cost of the treatment.

 

For you to do that, you need to start financial planning.  Look at your household income, evaluate your expenses, and reassess your financial goals for your family. Look into your insurer’s programs for autistic therapies to assess what costs they will cover.

 

Organize the financial aspects and research what type of funding you can access and start preparing a fund needed for the therapies.

Autism research is ongoing, and the therapists adopt new research into their therapy programs rapidly.  Time is of the essence, and new therapy programs for early intervention and treatment are emerging every year.

 

Consequently, your child with ASD will go through several treatments and therapies.  Not all of them will work, some will show progress and plateau, while some will even see the development erode.

 

You will need to start keeping records of all the therapies and treatments your child received, so you can clearly understand what therapy has worked. You can begin with keeping records by therapies or by the years. Scan all the documents, make notes, videotape your child’s progress, and file it all in a resource center you can access.

 

 

In the game of life, you have to play with the cards you receive. Your child’s autism diagnosis will come as a shock.  You will need to process the feelings, and take on the lead in giving your child the best resources and therapy to ensure they have a vibrant future filled with happiness.

 

Seek help from friends and family, ask for respite and remember to take care of you too, your self-care is critical to ensure you can care for  your child.