My #1 Piece of Advice for Parents

“What one piece of advice would I give a parent of a child who has just been diagnosed as being on the autism spectrum?” 

My answer? Understanding to action. You and your child just had a discussion with a mental health professional about the likelihood that your child, adolescent, or young adult has Autism Spectrum Disorder or ASD. You and your child probably have many mixed emotions, some are the same and some are different. Parents I’ve worked with over the years have shared their many mixed emotions and reactions to the idea that their child has ASD. Their responses have ranged from “I’ve never heard of that...” to “It can’t be ASD; I don’t want them to have autism!” to, “I’m not surprised, I’ve seen the traits and characteristics for years… there are probably others in our family who have Asperger’s or ASD…”

Feelings from this process can run the gamut from sadness and grief to fear and anxiety to a sense of relief and a "weight lifting from my chest and shoulders". Parents have said to me that they actually feel the diagnosis happened to them. They feel like something is wrong with them by the extension of their child’s diagnosis. It makes complete sense that parents can take the diagnosis of their child as a personal strike against them.

Parents might begin down a path of feeling defensive and reluctant to accept the diagnosis. Sometimes they feel like they did something to contribute to the diagnosis of ASD. These feelings might verify their own mental images, distortions, and stereotypes of classic or traditional characteristics of autism. All of these feelings, responses, and reactions are valid, real, scary, sad, and completely understandable for any parent who’s ever been in that situation. 

It’s at this point where a parent’s reactions to hearing of their child’s diagnosis of ASD can take two different paths. Neither are right or wrong. Both paths, however, have their own consequences. The first path continues down a road of very intense feelings of hurt and fear that can lead to reluctance in accepting the observations, assessments, and eventual diagnosis of ASD. Parents that go down this path may feel frightened, confused or even resentful toward others for suggesting ways to help the child. They can deny the diagnosis or wait for assessments that contradict each other. This path is a hard one for parents because it takes so much emotional energy and stress can run very high for parents on this path.

Again, this is not a path the parent chooses for themselves or their child! It’s hard to accept an ASD diagnosis when all the parent knows or 'hears' from the professional is “something’s wrong with your child… it’s your fault”. There is deep emotional heartache and pain when a parent feels something may be different with their child or that somehow the parent has contributed to their child’s many differences in some way. By the way, blaming the parent, specifically the mother for autism, was for many years the "scientific basis" for the condition. This is a myth that has long been debunked.

Thank goodness we know so much more today about ASD to dispel that myth and others. There is however much more to better understand about ASD for better actions and treatment interventions.

The second path for the parent who hears the diagnosis of ASD for their child can have the same initial sting of deep sadness and worry as the parent on the first path. However, parents who take this path leads them towards a feeling of validation of perhaps earlier feelings and senses, parental intuition, and suspicion that something may be awry with their child “since the day they were born”. I hear this saying frequently from parents and it's both literal in some cases and generalized in others as a way of saying, “I’ve sensed something different about my child for as long as I can remember…” referring to their awareness, intuition, and suspicions of challenges that were subtle but still present.

Parents on this second path also report numerous attempts to bring their concerns to medical, mental, and educational professions but instead experience feeling dismissed or over-reactive instead of supported for their observations and concerns for their child. Parents along this path also feel the challenges and needs their children exhibit are overlooked, diminished, and eventually dismissed until their symptoms become worse and eventually unmanageable. You can see why early identification and intervention is among the most widely known public service announcements for youth with ASD. 

In my professional experience, the reason parents end up on one of these two paths of an ASD diagnosis is due to the present diagnostic tools available to professionals.

At present, an ASD diagnosis cannot be verified or validated by any blood or physiological testing. That holds true for the majority if not all mental health conditions. Testing procedures for ASD is done in large part by some combination of standardized testing, human observations, and reports by parents, educators, family members and so on. ASD is ubiquitous in socioeconomic class, regions, race, and mostly gender, with males having slightly higher prevalence than girls.

Everyone with ASD has their own personal challenges that may or may not resonate exactly with another. One of the many challenges in diagnosing ASD are the signs and symptoms can and often do overlap and contradict someone else’s signs and symptoms. The phrase commonly used, “If you’ve met one person with ASD, you’ve only met one person with ASD.” meaning it’s a very personal and individual experience affecting everyone differently. Many people with ASD have common experiences, such as feeling left out, alone and misunderstood even though their challenges may be very different. 

Back to the question, “What one piece of advice would I give a parent of a child who has just been diagnosed as being on the autism spectrum?”. My answer remains: understanding to action. Understand and educate yourself about ASD for your particular child as well as their special gifts and talents. The more you understand their ASD as it relates to their particular challenges and strengths, then the better actions, plans, and interventions you can take to help them connect with others, communicate and interact socially, and manage these challenges with confidence and eventually independence. Understand, know, and love your child to help them with or without ASD. Someday, they will thank you.

If you found this article useful or insightful, please message me directly. I would very much like to connect with you. For more information about my online programs and educational materials, please visit my website: asdparentingjourney.com

Mitch Leppicello, LICSW, Clinical Social Worker and ASD specialist

Recommended Resources:

https://www.spectrumnews.org/news/remote-diagnosis-support-could-aid-families-during-lockdown/

Book: Asperger’s Huh? A Child’s Perspective by Rosina G Schnurr. 

The CALM Compass: Online parenting course for parents of children with ASD

#asdparentingjourney #thecalmcompass #asdparenting #asd #autismawareness