When your child is just diagnosed: what to know

In the past couple of months, I have talked to several families whose children have just been diagnosed with autism. Over the years, I have worked with many more families whose children just received their diagnosis. In most cases, the children were preschool age, some were elementary school age and some already in middle school. It is often children who can compensate better that get identified later, when increased academic and social demands exceed their ability to adapt and mask their challenges.

The day of diagnosis is impactful and never forgotten. Your child is the same as before, yet everything is different. The next steps for most families are unclear. There is so much to learn, figure out and do, all at the same time. The sense of urgency is overwhelming. This can be a time full of anxiety, information overload, confusion, and torturous concerns for your child’s future.


There is a lot of information out there on what to do when a child is diagnosed. I decided to add my two cents to this discussion based on my years of working with families whose children have autism. What you find below is light on inspiration and heavy on practicality. I hope you find it helpful.


Practical Steps to Support your Child:


  • DO seek out evaluations. Whether through public school or privately, your child with autism will need a number of evaluations to capture what is called his or her “clinical profile.” A clinical profile is a unique combination of strengths, challenges, and learning style. The specific supports, interventions and methodologies to use with your child are chosen based on this information.


  • DO learn as much as possible about special education process. Find credible sources of information, such as books, websites, webinars, and on-line courses to learn about your child’s rights, public schools' legal mandate and procedures that are common in special education. You will be much more prepared and in control for your next meeting, and for your child’s special education journey.


  • DO reach out to parents in your district to learn about their experiences with special education team at your school, or in your district, and what programs and services are available. It helps a lot to know what to expect. No more needs to be said about that.


  • DO find professionals on whose knowledge you can rely as much as possible while you are wrapping your head around everything you need to wrap your head around. It's a steep learning curve, but you won’t learn everything at once.


  • DO seek out a professional who will be on your child’s team long term, who will get to know your child and your family, and whose guidance you can trust. This professional can be a developmental neurologist, developmental pediatrician, psychologist, neuropsychologist, advocate, or anyone else with solid credentials. He or she should have significant clinical expertise with children like your child, and should resonate with your approach to and understanding of your child and his/her challenges.


Your Attitude and Expectations:


  • DO keep perspective. Remember that it is a marathon, not a sprint. Pace yourself, as well as your personal and financial resources. You’ll be learning things about your child over the years that will add more and more pieces to the puzzle of how to teach and support him/her best. You’ll learn if your child make progress quickly or slowly, and in what areas it is easiest or most difficult for him/her to learn. While in the beginning of the journey the future seems unpredictable and blurry, you will start seeing that future more clearly as your child enters middle school years.


  • DO remember that absolutely no one knows what your child will and will not able to do or accomplish. I have encountered a well-spoken college student with autism who was completely non-verbal until age 8. I have worked with children with autism who were on competitive sports teams. I have also worked with a child who was a candidate for retention in kindergarten, but who was instead moved on to 1st grade and by middle school was a completely independent straight "A" student and had a very close friend. Stay focused on what is necessary and optimal for your child today and in the nearest future. With a lot of hard work and patience, you will find out what they can do.


  • DO get used to change. Just as you figure things out, they will change. Just like all kids, your child with autism is a developing individual, but his/her developmental accomplishments and milestones might come with different timing. Do not get frustrated or discouraged with this part. Staying on top of your child’s changing needs is constant work, but it is also very important. Your child is growing and changing, and, hopefully, that change will bring your child and your family to a better place.

Your Home, Family, Friends, and Community:


  • DO be prepared to adjust your physical space and routines. You will likely find yourself having to adapt your home to your child’s sensory and other needs. You might need toys, equipment and quiet areas for taking a break. You might end up with visual supports and schedules plastered all over the place. You might need to adjust how you do everyday things like grocery shopping, bedtime and morning routines, going to restaurants, playground and to visit friends, and many other activities. You will base your communication with your child on his/her processing style. Therapists will be in and out of your house. One day you might be so used to all of this, you will no longer notice that you are doing anything differently.


  • DO expect that others might not understand, and allow yourself a feeling of gratitude when they do. If your child has mild challenges, even among your family or friends there might be a perception that you are just an over-worried parent and your child does not seem to be any different from others. There could also be misunderstandings of your child’s behaviors, eating preferences and social challenges, especially as your child grows older and they begin to stand out. You might receive advice to become stricter and not to “spoil” your child. More likely than not, you will be subject of stares and unsolicited advice in public places, such as stores, playgrounds, public transportation, etc. It is not pleasant, and there is not a perfect way to respond, but you will find your groove. Whether it is to ignore, to educate, or to have a ready sarcastic comeback, you will find your way. You will likely grow thicker skin, and if you connect with other parents like you, you will be able to find relief in having friends who "get it".


  • DO think of your other children if you have them and what their experience will be like. Make sure to make time for them and their needs.


  • DO remember that your child is and will continue to be so much more than the diagnosis. Just like with any child, you will have a rich and complex relationship with your child with autism. He or she will bring you to tears, amaze and surprise you many times. In tough moments (and let's be honest, those tough moments can last for hours, days, weeks and months), try to hold on to that.


Decision-making:


  • DO consider all recommendations critically. Some that are evidenced-based might not work for your child and your family, or might need to wait until the timing is right. Some interventions that are less researched, such as sensory integration and processing, listening therapies, special diets, could prove to be very helpful. There is not enough research to say with absolute certainty what each specific child with autism needs. Any professional recommendation is a highly educated and informed opinion that is infused with clinical experience and personal philosophy. You will be surprised how many contradictory pieces of professional advice and opinion you will receive over the years. If you are not 100% sure about a recommendation, take steps to get more information from other experts and form an independent opinion.


  • DO remember that there are unproven alternative treatments and “cures” out there that are very aggressively marketed. Some of them are not safe for your child. Make sure to do your homework.


  • DO keep an open mind. As a parent of a child with autism, you might find yourself doing things or pursuing interventions that are necessary yet do not easily agree with your parenting philosophy. You might need to throw out the window your convictions about using food as a reward, use of medications, types of educational programs, screen time, healthy eating, etc. Get a reality check and feedback from your trusted private team member to be able to separate your emotional investments as a parent from making solid decisions about your child’s needs. It is certainly a difficult balancing act.


  • DO keep in mind that the responsibility for all the decisions you have to make on behalf of your child might weigh very heavily on you at times. It is one of the reasons to think about self-care and your personal well-being.


Your Personal Well-being:


  • DO consider if you have the stamina, personality and time to be your child’s advocate. Special education process can be confusing and, at worst, exhausting. Hiring a professional can be a part of your self-care plan.


  • DO give yourself space to feel your emotions. Grief, guilt, anger, rage, frustration, sadness, loss, acceptance, pride, gratitude, amazement, feeling of grace -- there is no wrong way to feel, and you will experience these and many other emotions unpredictably over the years. There is no straight journey from more “difficult” to “happier” emotions. One mother shared with me me how eight years after her middle school daughter’s diagnosis, she was doing the routine work of informing a soccer team coach about her daughter’s autism, when she suddenly broke down in uncontrollable sobs. She was fully used to the diagnosis, and there was nothing special about this particular day, yet unpredictably she felt a powerful stab of fresh pain. On this complex path, no need to judge your feelings.


  • DO think about your own well-being at all times. This is similar to being on a plane in an emergency and putting on your own oxygen mask first, before helping a child. Through the most difficult days, have a solid self-care plan, so that you do not run out of oxygen, i.e. burn out or get sick. Enlist family, friends, babysitters, respite programs to help as needed.