Earlier this month The DC Voice published an article called “Inclusion and Self Determination for all“, in recognition of Autism Awareness Month. It highlighted some of the myths and misunderstandings that center around Autism. The conversation below is a continuation of our Autism Awareness month recognition with a question and answer session with the parent of an Autistic child. This mother of two gives you a glimpse into the challenges and joys it brings.
Q. Can you tell us a little about yourself?
A. I’m a 42 year old single mother of two lovely children, a 13-year old girl and 8-year old boy. My daughter is Neurotypical (NT), my son was diagnosed with Autism and ADHD when he was 2 years old. I work in the Human Resources field as a Technical Recruiter. Having a son with Autism has its challenges, but it’s taught me so much about special needs and the importance of tolerance.
Q. When did you realize something was different about your child?
A. It was first mentioned to me that something may be wrong by the pediatrician during a wellness visit. My son was not meeting developmental milestones. This prompted me to pay close attention and compare his development to my daughter (who is older). My son didn’t do anything without being prompted to do it, he allowed you to do everything for him (my daughter was the exact opposite). He also was not developing speech, instead he was making a repetitive (sound).
Q. How did you feel when you got the diagnosis?
A. I felt relieved when I got the diagnosis because now that we had an official diagnosis, we could come up with a course of action to help him develop. My goal for my son from this point forward was to make sure he had the best and most normal life possible.
Q. What have been the challenges you’ve faced?
A. The biggest challenge that I’ve faced is related to trying to get certain services for my son and having private insurance through my job. Some programs will only deal with Medicaid which is extremely frustrating. The other challenge is getting an appointment with a specialist within a reasonable amount of time. The appointment dates are 3-4 months out to see specialist.
Q. Can you describe a “typical” day?
A. Routine is extremely important to many on the Spectrum. My son constantly ask questions about where we are going and what we are doing next. He does not like surprises or things that are out of his normal routine. I typically prepare days ahead of time if something is going to deviate from the normal routine. For example, we just finished spring break. I started preparing him a week in advance that school would be out. There really is no typical day with an Autistic child. One minor thing can cause a meltdown, it continues to be a daily learning process for everyone involved.
Q. What has been your biggest hurdle?
A. Getting my son on a regular routine to go to bed at a decent time, to sleep through the night, and dealing with behavior issues at school has been the biggest hurdles. My son is finally in an Autistic program at a great school that is trained to deal with behavior issues, but we had to fight the school district to get to this point. I had many calls to come pick him up (3-4 times a week) because they couldn’t handle him, as a working parent this is extremely stressful situation.
Q. What have been your biggest joys?
A. At one point, I didn’t know if my son would ever talk. My biggest joy was when he started to sing the music playing on the radio in the car. That let me know that he was paying attention and retaining words. He slowly started to say words and form sentences. Now he won’t be quiet, he talks constantly and asks a lot of questions. He’s very precise with everything.
Q. What do you think most people get wrong or don’t understand about Autism?
A. Autism has a wide spectrum. While there may be some similarities, no two autistic people are the same. When you see a child acting out in public, don’t just assume that they are willfully misbehaving. Autistic kids often face over-responsiveness or under-responsiveness to stimuli, including sight, sound, smells, taste, touch, balance, and body awareness. This basically means that they are overly sensitive and it makes them extremely uncomfortable.
Q. What advice would you give other parents who find out their child is Autistic?
A. I would encourage other people to use all of the resources at their disposal. Also, seek early treatment and intervention. Avoid being in denial of the diagnosis, it hinders the child when they don’t get the treatments needed. Don’t listen to your family members that tell you there’s nothing wrong, you spend more time with your child than anyone else. Don’t ignore the signs. Know your rights, exercise your rights. Attend EVERY IEP meeting even if you think you’ve heard it all before. Advocate for your child, request more sessions of special services if you don’t see improvements in development. Access ALL resources, and ask questions if you don’t know. Don’t be afraid to challenge popular opinions.
Q. What do you think other people should know?
A. I think that other people should be aware that no two Autistic people are alike. Being a parent of a special needs child is stressful enough without people judging you or your child based on their behavior or outburst. If you are not Autistic, you will never understand the sensory issues that they face daily. Sometimes a simple trip to the grocery store turns into a huge ordeal. Acceptable social skills is a struggle for Autistic kids, they want to fit in, they want to play with other children…they just don’t always know how. Teach your Neurotypical kids that tolerance is important and everyone is not the same. Education of the disorder is key to understanding.
Q. Would you like to make a closing statement?
A. Look beyond the diagnosis and see the amazing, brilliant person in front of you. My son can play the piano (has never had one lesson), my son is great in math with little effort to no effort from adults around him, my son won 2nd place in the spelling bee at school this year. Despite his diagnosis, he’s an awesome little boy.