The journey from feeling incompetent to confident as the parent of a child on the spectrum doesn’t need to be a long one. The sooner parents become familiar with important supports and effective approaches, the shorter your learning curve may be.
Here are my top tips.
Feel free to add yours in the comments.
1) When I got my child a comprehensive occupational therapy assessment that includes large and fine motor skills, motor planning, and sensory processing, it changed things for the better. Like many children with ASD, he had problems with team sports, doing up buttons, using utensils, and pulling on winter boots. He couldn’t exert enough force to squeeze out the toothpaste from the tube. These are all autism-related issues that were identified by an occupational therapist. Once I knew what the challenges were, I could help him to master the skills which were so hard for him.
2) It is so important to get a full psycho-educational assessment, but don't rush the testing process! If the person you hire is being paid $200 an hour, there is pressure on that professional to get through the assessment. However, the most important step in the testing process is establishing a trust relationship with the child. That can take an hour...two hours...several visits. When the child trusts the tester, they may be more willing to participate in the process and anxiety may be reduced. This means the test results can be more reliable. This is important: we want an accurate picture of both his strengths and his areas of difficulty.
3) Teachers do not know everything about child development--and they are not experts on my child.
Teachers are often not required to have any special education or inclination in order to teach an autistic child. Strange, because most autistic learners process information more slowly than their peers, are visual learners, have myriad sensory differences, misunderstand what is expected of them, and do best when taught one-on-one. That's not even taking into account the many executive functioning problems that require constant supports--differences like poor organization, difficulties initiating tasks, managing time, managing emotions, remembering, paying attention, and understanding the main point. So...yeah. Teachers are great, but the powers that be do not prepare them well to support my child with autism.
4) Ignorance is definitely not bliss when it comes to autism--the ignorance of other people, that is. Society simply does not understand what autism is--or what it isn't.
Autism IS NOT a mental defect or a mental illness.
Autism IS a processing issue where sensory input is processed more slowly (and perhaps experienced more intensely) that a typically-developing person. Too many uniformed people interpret slow response to equal a slowness in intellect. Not true!! Some of the most brilliant and creative individuals in the world are autistic.
5) Ignorance is not limited to society at large. Family and friends can (and do) suggest the problem with your child is that you do too much for him, and so you are holding him back. Others say you are too easy on him/ too hard on him; too focused on his problems/ not focused on his problems.
Whatever their beef, you're the problem and they've got the advice that's going to make the difference; he needs some discipline. Make him eat something other than chicken nuggets. Hold him down and scrub his dirty hair. Take the iPad until he finishes his project. Make him rewrite that sloppy essay until it's legible. Yell at him if he doesn't get ready fast enough.
Sheesh. I wish I had politely told know-it-all relatives to zip it. Their disapproving comments and patronizing attitude toward my child were less than helpful: they did harm. He felt it all.
5) A lag in learning to independently brush teeth, wash hair, shower or bathe is really common in autism and can be caused by sensory, motor planning, and executive functioning challenges. If I knew these things two decades ago, my son would have mastered these essential life skills earlier: I would have understood the problems and known how to address them. I’d use the Occupational Therapy report to identify the physical issues, the psycho-educational report to figure out how he learns, and visuals to help him remember the skills.
6) The calmer I am, the calmer my child is: intentional calm is a parenting choice that makes a tremendously positive difference. It translates into less meltdowns and less anxiety, and children who learn to be more resilient. There are classes that teach calmer parenting—Mindful Parenting. Who knew!
7) My autistic child has made me a better person. He has taught me the meaning of courage. He faced fear every day and yet he put one foot in front of the other. His grit pushed me to learn more and I could never have imagined how far that would take me. He challenged me to find answers when it seemed there were none. Through panic attacks and loneliness, he would always ask me what else he could do to make things better. In searching for ways to help him through, I learned about perseverance, hope, and trust that everything will work out—is, not mine. He believed in me. I couldn’t let him down. I did it. You will too.
The daily efforts to help my child added up and he became independent. I always supported him to the degree that I know he needed, and slowly pulled back as he gained skill. I would ignore anyone who said he ‘must’ learn to do this or that on his own because now he is 9, 12, 15, or 17. He has a pervasive development disorder, and by definition, that means he’s going to take longer to learn many different things across many areas of human functioning. Life is not a race. The goals are to learn the things he must learn and the things he wants to learn, and to do so with his self-confidence and dignity intact.
9) Don’t wait for a fairy godmother to swoop in and pave the way and fix the problems. I have everything I need to be an effective advocate for my son: a brain, deep love, a sense of humor, lots of determination and a keen sense of justice. My son will get an education, have friends, and achieve his personal goals. Those who think fairness is treating everyone equally will have to step back while I work to level the playing field.
10) Never allow anyone to shame or punish your child for being autistic. If there is gap in the child's social understanding, find a way to teach him. If he is slow to acquire life skills, get an occupational therapist. If he's disorganized, get some professional ideas support for executive function skills. The support and relevant lessons you provide will make a world of difference to your child.
Today, my son has graduated from university, though there was a time when I wondered if he'd make it through high school. The more I learned, the more successful he was.
Today, Daniel is a respected self-advocate and my partner in Autism Goggles. More importantly, he is sweet, intelligent, funny, charming and patient to a fault. He is the best uncle in the world to his 11 nieces and nephews. He is a loyal and caring friend, and a kind and thoughtful son. He also autistic, and I am so proud to be his mom.