Frederic Guibet said he had suspicions something was different about his daughter when she turned 18 months old. He noticed her communication skills had begun to revert and her behavior changed. “It did not happen suddenly, but I remember considering at a very specific moment while we were listening to music together in the living room that she might have autism spectrum disorder. Another clue was she began to have stereotypical rocking/auto-stimulating rocking behavior. I am a neuropsychologist and I knew what it meant,” said Guibet, who is the CEO and founder of CommunicoTool, a company that creates language and development applications to help children with speech disorders caused by autism spectrum disorder.
Guibet’s daughter was formally diagnosed by a physician when she turned two years old. Guibet told The Cheat Sheet he is lucky to have been able to recognize the signs. “It’s pretty rare to diagnose a kid as early as two. My daughter has been lucky, and we started to set up a proper educational plan very quickly, in order to help her to go to normal school,” said Guibet.
Roughly 1 in 45 children between the ages of 3 and 17 are diagnosed with autism spectrum disorder, according to a Centers for Disease Control report. In honor of National Autism Awareness Month, The Cheat Sheet reached out to leading autism experts for advice on how to successfully navigate the challenges of caring for a child with autism.
Know the signs
Psychiatrist Jared Heathman said one of the signs of autism is repetitive movements and behaviors as well as changes in social interaction. “Autism is a disorder characterized by persistent deficits in socialization and restricted or repetitive behaviors. The latest edition of Diagnostic and Statistical Manual of Mental Disorders (DSM) rates both categories of symptoms into one of three severity levels,” said Heathman.
Ered Massie, licensed clinical social worker and assistant professor in the Department of Child and Adolescent Psychiatry at NYU Langone’s Child Study Center, also said parents should pay attention to changes in language development. “Parents should watch for delays in areas of core development, such as learning to talk, play and interact socially with others, or for loss of social skills or language. In terms of language, look for gesturing and babbling by 12 months, single words by 16 months, and two-word spontaneous phrases (rather than repetitive or stereotyped phrases) by 24 months. Some social development milestones that parents can look for are consistent eye contact and smiles or happy expressions by 6 months, a range of reciprocal facial expressions and babbling by 9 months, and gesturing (pointing, showing, waving, etc.) by 12 months. Speak with your child’s pediatrician if you have concerns in any of these areas,” said Massie.
It is important not to rely solely on your own observations when it comes to an autism diagnosis. It is necessary to get a formal diagnosis from a medical professional. Massie said autism is diagnosed in two phases. “Autism spectrum disorder is diagnosed by an experienced professional who collects information on the child’s development and behavior, through a two-step process that includes a general developmental screening and then a comprehensive diagnostic evaluation. All evaluations should include an interview with the parent and observation of the child. There are evidence-based diagnostic tools such as the ADOS (Autism Diagnostic Observation Schedule) and ADI-R (Autism Diagnostic Interview, Revised), that when completed by a qualified clinician, can be used to determine whether a person meets the criteria for an ASD diagnosis,” said Massie.
Don’t blame yourself
It’s also important that you don’t blame yourself for what is happening. Luis Bayardo, the father of two autistic boys and author of Autism: A Dad’s Journey, said the key to getting through this rough patch is to avoid self-blame and let go of the things you cannot control. “Don’t sweat the small stuff. This is not your fault, this is not your partner’s fault, God does not hate you, and you are not a failure because you sired an autistic child. Don’t waste time trying to find someone to blame … It’s OK to cry and stay up all night worrying; it’s natural,” said Bayardo.
Learning to cope with the stress of managing a recent autism diagnosis will help you be more emotionally present and able to effectively meet your child’s needs. Sarah Kern, a licensed clinical social worker and assistant professor in the Department of Child and Adolescent Psychiatry at NYU Langone’s Child Study Center, suggests building a strong support system. “Don’t try to go it alone. It is crucial to have family, close friends, parents of children with ASD, and therapists who support you as you start on this new path. Other parents will be particularly supportive — who else knows so well what you’re going through? They can be an invaluable source of information on family dynamics as well as on therapists and other resources,” said Kern.
Don’t forget the other kids
If you have other children, don’t forget they need support, too. They may feel left out and that all of the family’s attention has been turned toward their sibling. Remind your children that they are just as loved and special. Kern said it’s important to make the other children feel comfortable enough to ask questions. “An autism diagnosis affects the whole family. Your other children will have questions and reactions, and their feelings about having a sibling with autism need to be validated. Don’t withhold information — it will neither protect them nor make them feel better. Encourage them to ask questions, and process what the diagnosis means for them,” said Kern.
Don’t forget your partner
Your partner will need your love and support during this time. Remember that you were a team before the diagnosis, and you will need to remain a team throughout your child’s autism journey. Guibet reminds dads to be there for their partners. He also recommends resisting the urge to isolate yourself when things get tough. “Be there when she needs it. Being there for each other is important. There are so many issues that come with a special kid, and you can’t fight everything alone,” said Guibet. In addition, Bayardo said this can be an opportunity to look for ways to strengthen your relationship as you both learn to work through this challenge together.
Find your joy
Although raising a child with autism can be challenging, you can still live a full, happy life. Know that your child is just as brilliant and special as every other child and he or she has amazing contributions to make to the world. Make sure to continue your hobbies and do the things that bring you joy.
Kern also advises engaging in self-care so you can be refreshed and ready to handle whatever lies ahead. “Your child’s needs are paramount, but if you are going to be able to meet them, you must also take care of yourself. As parents, you are under a tremendous strain. It’s critical that you take a deep breath, step back a bit, and process your own emotions and needs. It will be hard, at first —your impulse will be to throw yourself into protecting and helping your newly diagnosed child —but it is necessary for your own long-term health, and that of the rest of the family,” said Kern.
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