My Child Was Just Diagnosed with Autism Spectrum Disorder. Now What?

You’ve wondered for a while, you’ve stressed about their behavior, but now you finally have a professional confirming it.  Your child has Autism or ASD. If you are anything like me, you leave feeling partly relieved, because, let’s face it, you have known it, but hoped you were wrong. But part of you is angry and grieving the possibility that those dreams you had for your child’s future may look different. But, what I have never understood, is how you can leave with nothing.  No next steps, brochures, pamphlets.  Nothing. 

I remember when I went to the OB when newly pregnant they filled me with info.  They sent me home with an entire bag of information to ponder. Will you store your umbilical cord blood, what pre-natal vitamins to choose, which hospital to deliver, to breast or bottle feed.  As overwhelming as that was, I at least felt like I had the information in front of me to make the appropriate decisions for me and my baby. 

Why isn’t it like that when your child is diagnosed with Autism?  You leave with a diagnosis on a piece of paper and a sinking feeling in the pit on your stomach.    

There are so many things I wish I knew right out of the gate.  Hopefully this helps.

Here are some things to begin to consider when you leave with an ASD diagnosis.

ABA Therapy– Applied Behavior Analysis Therapy. This is the most widely accepted for of therapy for people with ASD. Because many Autistic children and adults have social interaction and communication impairments as well as restricted interests, activities, and play skills they need therapy to help them navigate life’s different situations.  They teach social, motor, and verbal behaviors, as well as reasoning skills and work to manage challenging behaviors. A BCBA will target social, self-regulation, etc. and work to identify the why’s and what’s of behavior to replace challenging behaviors with more appropriate alternatives. They work on shaping behaviors through observation and positive reinforcement.\

In order to receive ABA therapy, you need to call your local ABA therapy clinic and ask for an evaluation.  They will determine what course of action they will take with your child and how many hours per week needed to achieve the desired results.  

Speech Therapy– Whether your child is non-verbal or adequately communicating their needs, I would suggest getting an evaluation with a speech and language pathologist. They will do a full evaluation noting what your child is doing well and what areas they are weak.

To obtain speech therapy you need to contact your local speech therapist and make an appointment for an evaluation. Many times you need a referral from a physician, either a general practitioner or a psychologist, in order to make the appointment. Typically, if you raise concern with your child’s pediatrician they will gladly handle the referral for you. Also, if your child is under 3 years old you can contact the department of early childhood.  They will provide a therapist to come to your home for therapy.  If your child is 3 or over, contact your public school system. If they deem necessary, your child may receive services through the school system prior to school age.

OT and PT– Because many children with Autism have sensory issues that are often more difficult to detect they many need Occupational Therapy to address the sensory issues causing unwanted behaviors. They can also be behind in fine motor skills leading to more issues in the school setting. For Physical Therapy, many children with ASD have difficulty in functional movement, poor balance, and challenges moving through their environment successfully.  Physical therapy can help strengthen their bodies in order to make these things easier.

For these services you need to reach out to a pediatric OT/PT clinic for an evaluation. Also, if your child is under 3 years old you can contact the department of early childhood.  They will provide a therapist to come to your home for therapy. If your child is 3 or over, contact your public school system. If they deem necessary, your child may receive services through the school system prior to school age. 

Diet Changes– There is mounting research that indicates huge behavioral changes just by removing a few inflammatory foods from your child’s diet.  Getting food sensitivity testing done is a good first step before removing any food from your child’s diet.  There are many mail order tests you can do such as Everylywell.com, has a food sensitivity test you can do at home with just a finger prick from around $100 depending on the foods tested.  You never want to just begin to remove these foods before the tests for a number of reasons.  For me it was the fact that I knew this change would be hard for my daughter and I wanted to make sure we did it right the first time. By taking away the foods they are sensitive to, you can begin to heal their gut. Balancing your child’s gut health can many times decrease tantruming and increase their ability to control their impulses. There are supplements needed to fully heal your gut and those need to be determined by a functional medical doctor once some additional testing is done.

A few books to read about diet changes and healing the gut are Healing and Preventing Autismby Jenny McCarthy and Jerry Kartzinel, M.D.  and also Healing the New Childhood Epidemic by Kenneth Bock, M.D. and Cameron Stauth.

AutismSpeaks.org– Has many different resources from helping you find providers in your area to an Autism Support Team (ART) to help you navigate the many aspects of the disorder. They also have a great guide on what to do from first concern to action. https://www.autismspeaks.org/first-concern-action

Support Group– This is one of the most important aspects of living with a child that is on the spectrum. Parents, especially moms, need to connect with others going through the same things. This is a great place to feel heard and learn from parents who may be a bit farther along in their journey.  

There are many other forms of therapy you can do to help your child as this is just a small snapshot of the most common therapies to start with when you begin to treat your child. Start with this list and let your child’s needs lead you to the therapies that work best for them. It’s not a one-size fits all disorder, so there are no right answers when it comes to which therapies your child should be doing. Hopefully this is a starting point to help you get started on this journey.

 

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