When a child is diagnosed with Autism Spectrum Disorder (ASD), the acceptance process that parents and family go through resembles the dynamics of grief, which comprises five stages: denial, anger, bargaining, depression, and acceptance. At this moment, it is as if parents begin to say goodbye to the profile of the "ideal child" and the expectations and dreams regarding them, and immediately find themselves faced with a whirlwind of emotions, information, decisions, and adaptations.
A diagnosis of autism is undoubtedly impactful and can cause feelings of guilt and significant stress for parents and caregivers. It is important for the family to seek support not only for the child but also to connect with support groups so that they can overcome any initial difficulties calmly, maintaining the physical and mental health of everyone. ASD is a subject that more and more people are aware of, but there is still a lot of misinformation. Some family members may have misconceptions or a limited or distorted understanding of autism. Each autistic person is unique, with distinct abilities and limitations. However, not everyone is aware of this and may have a stereotype of what autism is and what an autistic child can or cannot do. This situation can be addressed in one way: educating oneself and others about autism in general and about the specific condition of the child's diagnosis.
Regarding the initial stages of grief related to autism, parents, guardians, family members, and caregivers can use the following strategies to cope more effectively with the new situation that has just been presented: Autism Spectrum Disorder (ASD) is a subject that more and more people are aware of, but there is still a lot of misinformation. Some family members may have misconceptions or a limited or distorted understanding of autism. Each autistic person is unique, with distinct abilities and limitations. However, not everyone is aware of this and may have a stereotype of what autism is and what an autistic child can or cannot do. This situation can be overcome in one way: educating oneself and others about autism in general and about the specific condition of the child's diagnosis.
- Taking time to accept the diagnosis: Sometimes, parents rush through this phase, neglecting their own physical and psychological needs and those of other family members, as they are focused exclusively on caring for the autistic child. Feeling insecure, sad, apprehensive, or any other negative sensation is part of the initial phase, and these feelings can be managed by remaining calm and open to seeking information and receiving help. Therefore, it is crucial that parents take time to experience the feelings that accompany the diagnosis of ASD and remain attentive to their personal needs. Furthermore, it is essential to remember that autism is not a sentence, neither for the child nor for the family.
- Eliminating guilt: Some parents spend a lot of time trying to identify the cause of the autism diagnosis or lamenting not having noticed the symptoms earlier. This often triggers guilt, defeatism, and shame. This type of behavior is never productive; on the contrary, it keeps parents stagnant, worrying about what they believe they should have done, and prevents them from focusing on solutions.
- Seeking help from others in the same situation: there are several support groups for families of children with ASD, and many of these groups can be found on social media. In addition, it is advisable to meet other families in person who are going through the same situation to exchange experiences, as this will broaden understanding and comprehension of autism.
- Make time for the couple's relationship and for other family members: set aside time for the couple, even if only a few minutes, to focus on each other daily and not just on the autistic child. Regarding other children and other family members, it's important to reassure them and, as far as possible, maintain a routine in which there is constant interaction and consideration for everyone.
- Making new plans: before the autism diagnosis, parents already imagined their child playing sports, graduating, getting married, and having children. Some of these anticipated achievements may not materialize, but a number of other victories are possible. Expectations and plans need to be adjusted to the new reality, maintaining the focus on helping the autistic child become the best they can be.
Reference:
ALI, Dilshad D. How to Handle Your Child's Autism Diagnosis. Parents.com. 2015. Available at < https://www.parents.com/health... >. Accessed on: May 29, 2021.
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Author: Carol Marcellino