There is a Light at the End of the Tunnel after Autism Diagnosis.

There is a Light at the End of the Tunnel after Autism Diagnosis.

            I know exactly how you feel. I felt just like you eighteen years ago. I took my son Dan to a speech therapist at OHSU because at the age of eighteen months he still didn’t speak. After spending one hour watching him being evaluated and filling out questionnaires, the speech therapist concluded that we should not rule out autism. What did she mean? That’s not possible! How can he be autistic? I have an older son Adam who is perfectly healthy. All our family members are healthy. How could Dan possibly be autistic? His only symptom was that he didn’t speak! And he was just eighteen months old! Yes, many children talk by that age, but there are also children who start talking later. That might be the case of my son. We were not prepared for a diagnosis like this. That was the day my world fell apart. I didn’t even know how I made it out of the hospital – I was in denial, I was numb, and I was devastated. In my mind this was an educational death sentence for Dan. The only time I’d heard about autism before was from the movie “Rain Man”.   I couldn’t imagine raising  Rain Man, that wasn’t part my life plan.

Let me tell you that Dan just celebrated his twentieth birthday. He is a sophomore at Portland State University studying computer science. The last eighteen years have been a journey filled with many hills, valleys and detours, but also with lots of joy and celebrations, and it is a constant work in progress. There are things that I wish I had known eighteen years ago, and I want to share them with you. If parents are more prepared for some of the individual challenges of children with autism, they will be able to support them in the best way possible.

            First of all, as a parent of a child with autism, we are our child's best and most passionate advocates, therefore advocate, advocate, advocate for your child! From a healthy child we expect making mistakes, learning from them and moving on. This is not so straight forward with an autistic child. An autistic child is delayed socially and sees the world through the eyes of a younger child. If your child comes home from school and is frustrated, find out exactly what happened. Was your child left out when children were asked to be paired up? Was he sitting alone at the lunch table? How did he feel? Ask the teacher to pair up your child with another student ahead of time.  Ask her to make sure that your child sits at the lunch table with a group of peers.  One of Dan’s favorite shows when he was ten years old was the cartoon “SpongeBob SquarePants”. One day he came home from school crying because he was sent to the principal’s office for saying a bad word. Students heard Dan saying, “Holy Sh***” and told on him. SpongeBob frequently says the phrase “Holy Shrimp”. It was Dan’s favorite phrase. Because Dan has a lisp, students were sure that they had heard a bad word. Dan tried to defend himself, but once he realized that it was an uphill battle, he just gave up. The majority of the students heard a bad word, and the teacher with thirty-five fourth graders didn’t take extra time investigating. I told the teacher that although I wasn’t in the classroom when this happened, I’ve never heard Dan use that word before. Dan was really sad about the unfair treatment, and there was nothing to do since he had already been punished.  His teacher was glad that she could understand Dan better. Close communication between parents and teachers is essential for social development, and everyone needs to be on the same page in order to create a strong support team for your child.

            Second, parents of autistic children should do a lot of role playing. Children with autism crave structure and predictability. They respond very well to scripts that tell them exactly what to do and what to say in certain situations.  Observe your child in social situations. When you volunteer at her school, watch closely how she interacts with other children and how other children act toward her. If your child comes home frustrated and describes to you a situation that happened in school, listen carefully. Then recreate the same scenario at home. Come up with a script, and practice a dialogue with your child. If a similar situation happens again, your child will be better prepared to respond. Be consistent in practicing various social situations. The most recent role playing I did with Dan was when he went for his job interview. We went through the whole interview several times, starting with a proper handshake and keeping eye contact to a plethora of possible questions that his potential employer might be asking. Dan got a part time job at the garden store, and he turned out to be a very hard working and loyal employee. 

            Finally, talk to your child about personal safety from an early age. This is a very underestimated topic among parents with autistic children. People with special needs are at higher risk to be taken advantage of.  Autistic children are not good at reading body language and figuring out the person’s intent. Unintentionally they might put themselves into situations that make them an easier targets to be victimized.  Their social knowledge is black and white and very limited in between. They are also socially very isolated, and if finally someone talks to them, they embrace it. The stranger who talks to them might be a nice and compassionate person, but she also might be a scammer or predator. Maddie, a high functioning autistic seventeen-year-old girl, was approached by a woman who told her a very sad story about how she needed to get to Seattle but all her money was stolen. All the lady had was a check that she couldn’t cash because the bank was closed. Maddie felt very sorry for her and gave her all the cash she had with her in exchange for the fraudulent check. Make sure you spend lot of time talking to your child about personal safety issues and present them with multiple possible scenarios without scaring them.  

            Raising a special needs child is a journey that none of us signs up for when we decide to become parents. It is journey filled with frustration, joy, anticipation and fear. If we could, we would breathe for our children. We are happy when they are happy; we cry when they cry; and we hurt when they are in pain. It is a very special bond. There is a lot more information about autism today than there was when we first started our journey. We need to educate ourselves about autism all the time. Knowledge is power, and it helps us to be better prepared to handle individual challenges.  Don’t worry what other people think or say. Follow your own gut feeling, and if something doesn’t feel like a good idea, don’t do it. You are the parent, you know your child the best, and you want the best for them. 

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