When parents realize that a child has autism, grief is inevitable/ShutterStock
The rate of people diagnosed with autism (ASD) is on the rise worldwide and the reasons for this are many and varied. One of the reasons is attributed to the expansion of the definition and criteria for diagnosis (which now also include children with normal cognitive function), along with an increase in awareness, both of parents and of the educational frameworks. According to the updated data from the Authority for Disease Control and Prevention (CDC), the number today stands at 1:54. At the same time as the rate of those diagnosed increased, there was a constant decrease in the age of diagnosis and today babies can be diagnosed as early as one and a half years old.
When parents realize that a child has autism, grief is inevitable. The frustration, the confusion, the helplessness and the worry for the future paint the reality in gloomy colors and introduce a lot of anxiety, tension and stress - it's natural, it's normal, and it makes the most sense in the world! Let yourself be there. Like any change in life here too, the family system has to adapt, learn to live again and it doesn't happen overnight. So what? Pay attention to the strengths and try slowly and methodically to disperse the fog, to find the strength to create a safe and predictable routine for you and your family. It is difficult to succinctly summarize all the ways to create order in the chaos, but here are the first steps:
get to know well and in depth
: get to know the disability and study its characteristics in depth because knowledge is power. What is a communication disability anyway? What are the different levels of function? What are the salient features? What are those special needs? How are the difficulties manifested in your specific child? What are the different treatment options? The frames offered? The benefits you deserve? Stay informed and rely on reliable sources of information. Understanding the situation can greatly contribute to adapting the environment, creating priorities and properly planning all resources.
Establish a support network
: studies consistently show that one of the essential resources for family coping with disability is a support network, especially from other families in a similar situation. You can learn a lot from the experience of others, get stronger, vent and share. Connect with other families who have children with autism. Nowadays it's easy to find each other, there are many groups and forums on the various networks, find the place that is convenient for you and the appropriate group. Parents who are going through a similar experience can provide valuable insight, advice and emotional support. Don't be in this alone!
Early but not rash intervention
: diagnosis at an early age also allows treatment and intervention at early stages of development. These are years when the brain is still developing, connections are still being built and it was found that therapeutic intervention and an adapted environment may play an important and significant role in improving function. However, do not be reckless, many professionals work in the field and there are diverse treatment approaches. Get to know the different treatment approaches in depth, check the professionals carefully, ask to talk to previous patients, insist on recommendations and think about what is most correct and suitable for your family and your child. The decision on the treatment is long-term and significant.
Be involved in the treatment
: the involvement of the parents in the treatment has been found time and time again to significantly contribute to the overall progress of the child. Help yourself with targeted parental guidance that suits you, and remember that in the end, along with all the doctors, experts and diagnosticians, you the parents know your child best, you are the ones who want his best interests more than anyone else, and you are the ones he needs in order to trust the world. Always keep your finger on the pulse, not every treatment is suitable for every child, not every professional knows everything.
Take care of yourself:
To take care of a child with special needs requires a lot of strength, therefore it is important to increase mental resources, and take breaks. It sounds like psychology on a dime, but it is scientifically proven! In order to prevent burnout, you have to learn to relax and recharge. Invest time and thought to research and learn what relaxes you? What helps you cope? What do you need? And be sure to get stronger.
Even after the diagnosis - it's still the same child
: receiving the diagnosis can bring great stress and confusion into the relationship with the child, it's natural and as mentioned it's almost inevitable. But it is important to remember that in the end the child you leave the examining doctor's office with is exactly the same child you entered with. And what he needs at the end of the day, is parents who will look at him with good eyes and a loving heart. Parents who would like to discover together with him the path that can also be, alongside all the challenges and difficulties, very close.
Written by
Dana Amer
- a certified behavior analyst, with a master's degree in special education from Bar Ilan University, a lecturer and accompanying parents, families and educational teams.
Even after the diagnosis - it's still the same boy/ShutterStock
The Jama application was established with the aim of providing a response to mothers of babies between the ages of birth and three, and to gather for them content, activities, tips from experts and videos that will accompany them throughout this challenging period. All the content in the application "grows" together with the baby and is precisely adapted to the stages of his development, so that the mothers receive only what is relevant to them and interests them at any given moment.
The Jama app is the place for mothers in Israel to meet and get to know other mothers around them, and to create new and exciting friendships in the fascinating journey.
Search us on Google: https://app.jama.co.il/
Dana said, in collaboration with JAMA
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