Practical advice for parents whose child has recently been diagnosed with autism. Includes information on finding emotional support, as well as tips on choosing therapies.
So your child has been diagnosed with autism. What now?
Taking Care of Yourself: Feel Your Feelings
When my son was diagnosed ten years ago, I was shocked. How could my three year-old boy, who knew all his letters and numbers, who could draw these amazing, recognizable pictures at such a young age, be afflicted with this disability? My husband and I truly believed he was gifted. True, he wasn’t really speaking in sentences yet, but lots of boys are late-talkers. And yes, he was a picky eater. He also liked to line up his toy animals, but I’d seen many other children lining up toys as well. It took a while for me to come to terms with the diagnosis.
Some parents know something is wrong. They, too, have been through the ringer, dealing with unhelpful advice from family, friends, and even strangers, who say things like, “Oh, he’ll grow out of it,” or “You just need to discipline him better.” They see many doctors and specialists, until they finally get the official diagnosis. They may feel some relief, that their perceptions have finally been validated. Even so, the autism diagnosis is still painful.It is important to allow yourself to feel your feelings, whatever they may be. It is normal to go through a period of grieving, much like you would grieve the death of someone close to you. This does not mean that you do not love your child, it means that you need to take the time to let go of the hopes and dreams you’ve lost. I believe all parents go through a form of this, when they finally realize that their child is not going to be a star athlete, or homecoming queen, but it is more abrupt when your child is diagnosed with a disability.
Give yourself time and space to grieve. Many parents faced with this diagnosis will throw themselves into a search for “the cure”, logging in countless hours online researching various treatments. This is also an important part of your journey, but be careful not to use this as a way to bury your feelings. If necessary, seek help from a trained therapist, or a trusted friend or family member. At this point, the pain can feel overwhelming, but it will come back to haunt you later if you don’t allow it to run its course.
Connecting With Others
Other parents of children with autism can be your lifeline during this difficult time. They have walked in your shoes, they can validate what you are feeling, and they can offer advice on what has worked for them. Most importantly, they can show you the light at the end of the tunnel. Autism has not destroyed them, or their child.
The Autism Society of America has chapters in every state, and can also help you to find a local support group in your community where you can connect with other parents.
Many therapy centers also offer parent support groups. When my son was in preschool, the school psychologist offered monthly parent meetings where we would meet for coffee and share our challenges and triumphs. I am close friends with many of those parents to this day.
It is inevitable that other people will not understand what you are going through. The best way to handle this is to educate them. The Autism Society offers many free printable resources that can be passed on to grandparents, teachers, and anybody else who will be spending time with your child. The site also offers business cards that explain your child’s condition. Many parents pass these out whenever their child has a meltdown in public.
The sad truth is that not everybody will understand. You may find that some relationships fizzle out at this time. This can be sad, and again, it’s important that you allow yourself to feel your feelings. Take comfort in knowing that everyone experiences this, it just feels more abrupt when it happens at a time like this. It’s important to take care of yourself, and to avoid people who judge you or your child. The good news is that you will find out who your true friends are, and these relationships will generally be strengthened as you move through your autism journey.
Helping Your Child: Different, Not “Broken”
The sad truth is that society views autism as a disability. True, people with autism have challenges, but this is true of everyone, whether they have a disability or not. Your child is still the same beautiful, amazing, loving child he or she was before the diagnosis.
Autism is just a word. It is a label used by medical professionals and schools to categorize people who have a certain cluster of difficulties in specific areas. All kids have challenges. It’s just that our kid’s challenges are a bit more obvious. The label does not change who they are.
There are many successful, happy adults with autism living full, happy lives. People like Temple Grandin, John Elder Robison, and Steven Shore have learned to use certain facets of their disability to their advantage.
You will have many feelings, and this is normal. Please remember that this label does not change who your child is. Your child still has the same likes and dislikes, the same interests, and can feel the same joy and happiness as before the diagnosis. It can be challenging to focus on your child’s strengths, in a world that values many things people with autism find difficult, but I’ve never met a child with autism who did not have something amazing in their own right. My son is a talented artist. Another child I know sat down at a piano and started playing by ear, even though he’d never taken a lesson. These children are not less-than, they are just different, and different is good. Different is necessary. Our society needs different, even if many don’t know it yet. Your child has a contribution to make, just like everybody else.
When my son was diagnosed, I spent hours surfing the internet, seeking new treatments. There were many new, unproven programs that promised miraculous results, and as a parent, my advice would be to take your time when making treatment decisions for your child.
There are many approaches out there, and my purpose here is not to debate which is “right” or “wrong”. It just that it takes a long time for an approach to accumulate enough research to be proven as “evidence-based”, and as a parent you may feel that you can’t afford to wait.
Unless it is an obvious medical emergency, such as a seizure disorder, there is no need to rush into anything. Some professionals will push you to start immediately with claims that early intervention has the best long-term outcome. While there is some truth to this, be aware that the latest research shows that brain development does not stop at the age of five, and that it is possible to make significant changes at any age.
I would also advise seeking an unbiased opinion from a trusted friend or medical professional before starting any treatment, especially anything biomedical. First and foremost, make sure that the treatment is safe. Research possible side effects of any drug or supplement before giving them to your child.
Remember, every child with autism is unique. A program that worked wonders for one child may not be appropriate for your child. What are the specific benefits you are looking for in a program? Is speech an issue for your child? What kind of sensory issues do you need to address? Make sure that the program is a good fit for your child’s needs.
Autism treatments also tend to be expensive. Many states have passed laws requiring insurance to cover certain evidence-based therapies, so check with your insurance company to see what is covered.
It can also be tempting to try several programs at once. Many families do end up using various treatments, some biomedical, some educational, but it is important to take these one at a time. If you start several treatments at once, your child’s symptoms may improve, but you won’t know which treatment is responsible for the improvement. Starting several treatments at once can also be overwhelming, for both you and your child. It is better to try one approach at a time, to find out what is truly beneficial for your child.
As a parent, I would also advise you to follow your intuition. You may not be an expert on autism, yet, but you are an expert on your child. What works for one child may not work for another. All therapies have their drawbacks. If you feel that any given therapy is detrimental, or is not giving your child the results you’d like, move on.
Advocating For Your Child
One of your roles as a parent will be to advocate for your child. You will have to advocate with the school system, to get the accommodations your child will need in order to be successful in the classroom. You will need to advocate with doctors, therapists, and other professionals, who may have differing opinions on what is the best approach for your child. You will have to advocate with your neighbors, friends, and parents of other children, who may not understand the challenges your child is facing.
For me, advocating was one of the more daunting tasks I faced as a parent. I am not, by nature, an outgoing person. I tend to avoid conflict, so it was difficult having a child with a condition that could often cause conflict in so many settings. I know many parents who are, by nature, warrior types. They go into IEP meetings with stacks of papers, research, and legal documents, ready to fight to the death to get the accommodations their child needs. There is nothing wrong with this, and in some cases, it’s even warranted, but don’t feel discouraged if this does not feel like you.
Advocating doesn’t have to be a battle. Sometimes it’s quietly educating a family member or neighbor by giving them some reading material on autism. It can be standing firm on your decision to medicate, or not medicate, your child, when another disagrees with you. It can be making connections with various professionals and parents, to find out what has worked for them, and to get ideas for helping your own child.
If you find yourself in a situation where you need to be a warrior, whether it’s with a school team or with a therapist or medical professional, there are resources at your disposal. The Autism Society offers lists of local advocates and lawyers who can help you in these situations. You do not have to go it alone.
One Step At A Time
Parenting is a marathon, not a race. It is important to take things one day at a time. Try not to worry about the future. I know it’s difficult, but it’s a waste of your precious energy. Do what you can do, today, even if it’s only getting yourself and your child through another day. I promise, there is a light at the end of the tunnel. The day will come when you no longer feel the pain, when you can see your child in the light of what he can accomplish, as opposed to what his limitations are. Seek out support, take care of yourself, and love your child. It really will be okay.
National Autism Resources: www.nationalautismresources.com
Autism Society of America: www.autism-society.org
Autism Speaks: www.autismspeaks.org
Applied Behavior Analysis (ABA): www.lovaas.com
Relationship Development Intervention (RDI): www.rdiconnect.com
Floortime (DIR): www.floortime.org
General Autism Information
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs by Chantal Sicile-Kira and Temple Grandin (Sep 7, 2004)
Ten Things Every Child with Autism Wishes You Knew: Updated and Expanded Edition by Ellen Notbohm and Veronica Zysk (Oct 1, 2012)
Understanding Autism For Dummies by Stephen Shore, Linda G. Rastelli and Temple Grandin (Sep 19, 2006)
Emotional Support for Parents
You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities by Stanley D. Klein and Kim Schive (Mar 1, 2001)
More Than a Mom: Living a Full And Balanced Life When Your Child Has Special Needs (Mom’s Choice Awards Recipient) by Heather Fawcett and Amy Baskin (Apr 30, 2006)
Let Me Hear Your Voice: A Family’s Triumph over Autism by Catherine Maurice (Jul 19, 1994)
The RDI Book: Forging New Pathways for Autism, Asperger’s and PDD with the Relationship Development Intervention Program by Steven E Gutstein, Ph.D., Carlotta Baird and Hannah Gutstein (May 29, 2009)
Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think (A Merloyd Lawrence Book) by Stanley I. Greenspan and Serena Wieder (Feb 10, 2009)
The Autism & ADHD Diet: A Step-by-Step Guide to Hope and Healing by Living Gluten Free and Casein Free (GFCF) and Other Interventions by Barrie Silberberg (Apr 1, 2009)
Adults Living With Autism
The Way I See It, Revised and Expanded 2nd Edition: A Personal Look at Autism and Asperger’s by Temple Grandin (Mar 15, 2011)
Look Me in the Eye: My Life with Asperger’s by John Elder Robison (Sep 9, 2008)
Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Second Edition by Stephen M. Shore and Temple Grandin (Jan 31, 2003)