One of our own undergraduate psychology students, Ingrid Castillo, was kind of enough to share her story during an interview for autism awareness month.
*Please note, this blog includes excerpts from the full interview to keep with length and formatting requirements*
What situation are you facing and more specifically, what symptoms did you notice that gave you your first suspicions that something was wrong?
I am a mom of two boys with autism. Although they have the same condition, the manifestation of the symptoms was somewhat different. My oldest son experienced a slow regression. The changes in his behavior began when he was 21 months old. As time passed, the intensity of the symptoms increased. He lost a significant amount of words in his vocabulary, stopped responding when hearing his name, was biting everything and everyone, and was putting inedible objects in his mouth. He would also vomit or gag during meals due to textures, smells, and tastes, became restless, was oversensitive or had no tolerance to pain, and had difficulty sleeping and transitioning.
On the other hand, my other son had a drastic and sudden regression at 15 months old. He had a complete loss of communication and social skills, appeared to be lost in his mind, and had abrupt changes in mood. Some other differences were that he was unpredictable, constantly screaming, had endless tantrums, insomnia, vomiting and gagging due to sensory issues, and would be drawn to dangerous things without fear or danger awareness. At the same time, however, both also developed extraordinary abilities.
Why did you decide to get a diagnosis and how did you go about it?
I decided to get a diagnosis immediately as soon as Nico, the youngest, showed manifestations of the symptoms. I was desperate and wanted to find answers and solutions. We even emigrated from our beloved island, leaving everything behind. A few months after Nico showed symptoms, Ian’s symptoms became more noticeable and I once again felt blindsided and desperate.
What was the diagnosis experience like?
The doctor gave us the diagnosis with not much explanation and rushed to his next patient. His secretary handed us a packet of referrals along with an autism booklet full of advertisements instead of useful information. Ironically, this was the first time I witnessed the correlation between autism and a lack of empathy. At least I had some information to start with. Unfortunately, the amount of information given, although appreciated, was not practical. None of the suggestions could be translated into reality.
How did you and your children initially react to the diagnosis?
I was in disbelief despite the undeniable fact. For sure, it was a knock out but the war was far from over. Although I was dazed, confused, and hurt, the adrenaline caused by the fear of losing them kept me going.
The boys did not react to the diagnosis because they were too young to comprehend it. They have grown knowing their condition, the challenges involved, and believing there is no limit to their abilities if they work hard and persist. They are able to feel just like everyone else because they understand the reality that everyone is unique. They see autism like it is, as just a label to a group of symptoms.
What about you? Has your life changed and do you feel supported through this change?
It changed me in many ways. It made me a highly multifaceted person. My personal experience made it easier to understand what my children were going through and at the same time seeing them experience the struggles helped me visualize, study, comprehend, and modify certain processes that I lacked. To be very honest, I feel this experience has broken me. I was unable to finish my last year studying Human Resources, had to turn down what was once my dream job, I have been sleep deprived for years, struggling financially, and often mistreated and underestimated by others for being late or taking too long to finish a task. What people do not understand is that I do everything while also taking care of my children. I gave them my all not knowing that in return they would give so much more back. They have rebuilt me in a better way. Thankfully, I have recently been able to continue my studies and thanks to them, I know the real person I am and my true potential.
My main source of support has been given by God. I know with certainty that no matter what happens He will take care of us. I can also count on my husband. He is great dad and there is nothing he wouldn’t do for our kids. Other than them, I’ve felt support in very few places and from very few people. Surprisingly, though, that support has come from people I didn’t expect.
What advice would you give to a family who is about to go through what you have gone through?
You should love and support your children. Be open-minded and expect changes. Recognize that there will be obstacles but this should not limit anyone from having life experiences. Read, read and do more reading. Remember that no one cares for your child more than you do. Believe your child is awesome and eventually people will think the same way. Above all else, enjoy your experiences with them.