I empathize with new autism parents as I know how frightening, confusing, and frustrating it can be to be entering a world that you do not understand and never expected to be in. When starting out on this journey, you get a lot of input and advice that is helpful and overwhelming all at the same time. Some of that advice will be consistent, and other advice will be conflicting. Over the last 10 years, I’ve built up my own set of advice that I’ll save for another writing, but this one piece is vital for anyone who has concerns and issues with their child’s development. Do NOT wait for an official autism diagnosis before pursuing early intervention therapies.
When a parent first hears the words Autism Spectrum Disorder (ASD), there can be lots of emotions and reactions, among them denial, immediate action for evaluations or therapies, or a wait and see approach. I can squarely tell you that denial is never a good answer as time is of the essence in early intervention. Choosing between the other two, however, is more complicated than you think.
There has long been a clinical divide in the world of autism distinguishing two distinct types of autism: one present at birth and one that manifests during toddlerhood (usually between 15-30 months). In the first case, the autistic symptoms are more readily apparent at birth. In the latter case, known as regressive autism, recognizing the autism is not so clear cut. Regressive autism has historically been applied to children that develop normally up to a point and then begin to lose acquired skills. The gradual loss of skills and emergence of symptoms can be a qualified hot mess to navigate.
Children on the autism spectrum are as unique as snowflakes: no two are the same. Children may share similar symptoms, but their challenges and abilities will be uniquely their own, as are their therapy needs. As the saying goes, “if you have met one person on the autism spectrum, you have met one person on the autism spectrum.” The gradual progression of symptoms, varying degrees of severity and types of needs, and the lack of a readily available holistic protocol for evaluations can make arriving at a diagnosis very challenging.
I caution parents on this slow progression of symptoms, because we have lived it. Our son was, by all evidence, a normally developing baby until around 18 months. He smiled, laughed, made eye contact, made all the sounds, sat up on time, crawled on time, and walked on time. We honestly had not one symptom that would have even begun to tell us there was anything amiss.
Around 18 months, I noticed he was not talking as much, and he had stopped saying some of the words he had acquired. We watched him closely over the next few months – that wait and see thing, right? We then had him evaluated through the Tennessee Early Intervention System (TEIS). At that time, they recommended only speech therapy, which we began just after his second birthday. Sensory symptoms emerged very gradually over the next year and were mild enough that they could easily be confused with a high-energy toddler boy or a testy toddler. Hindsight being 20/20, I now recognize what those symptoms were. Just after his fourth birthday, the sensory symptoms began to explode. Extreme auditory sensitivities, inability to sit in circle time, running and jumping throughout the classroom and at home, humming and scripting (reciting dialogue from TV shows or other conversations), meltdowns at birthday parties, sensitivity to touch, and withdrawal from social engagement even with us. We felt like we were losing our son, and the situation was spinning out of control faster than we could get help.
We then consulted with an occupational therapist and child psychologist. We did not get an official autism diagnosis for our son until he was five years old, nearly three years after we had begun our initial speech therapy. During that same time, I had sought full developmental evaluations from several providers, all of whom had waiting lists ranging from 9-18 months. One provider called me back a full year later, not with an appointment, but to schedule an appointment months later – so much for immediately seeking an evaluation. I have Monday morning quarterbacked myself to death over what I would have done differently in seeking help for my son, and outside of a couple of decisions, I really do not know what else we could have done.
There is no playbook for parenting on the autism spectrum. There is no standard treatment for autism, no standard medication, no standard ongoing evaluation protocol. However, there are plenty of avenues to pursue for the individual needs of the child. If you have concerns, I do recommend starting with TEIS if your child is under 3 years old, and if older, I do recommend seeking a full developmental evaluation. I would suggest beginning with your pediatrician to get help scheduling an appointment or getting a referral for a comprehensive developmental evaluation. If you do not get a satisfactory answer from your pediatrician, I encourage you to trust your gut and be persistent with seeking services. If the wait is as long for you as it was for us in getting a comprehensive evaluation, I encourage an a-la-carte approach to get evaluations from a speech therapist, an occupational therapist, an ABA therapist, and a child psychologist. From there, you can at least have a good idea of what the needs really are and can get on offense for your child. If you are looking for a good list of signs and symptoms of autism as well as screening information and treatment options, this is a great place to start. If you are a parent on the autism spectrum – a rookie or a veteran – please know that your child is amazing and wonderful and that you very much not alone.
Originally from Louisiana, Betsy McLean relocated back to Memphis 10 years ago after living in Jackson, MS and Shreveport, LA for a number of years. Rhodes College originally brought her to the Bluff City, and ever since her college days, Memphis has felt like home. Betsy is a Managing Director in Institutional Fixed Income for Raymond James, and she has practiced in the field of fixed income for more than 20 years. She has been married to her husband Kenneth for nearly 22 years and they share four amazing children: John(11), Jim (10), Michael (4), and Maggie (2). Betsy is active in her Catholic faith and works in the Children’s Liturgy ministry. She has always loved children, but having a child on the autism spectrum transformed her from a general child fan to an enthusiastic special needs advocate. She loves to encourage and support families and children living on the autism spectrum and is a persistent advocate for early intervention.