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Y.

Male | 3 years & 10 months

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Y.

Male | 3 years & 10 months

Y.'s Journey, as told by A mother in Cairo

When and why did A mother in Cairo start to feel concerned about Y.'s health and development?

My son was two and a half years old when the nursery staff called us - me and his father - for a meeting. They said he has severe tantrums and he doesn't want to play with anyone. He wants to do what he wants to do, not to follow the class rules. He sticks to a certain toy or a certain activity and doesn't want to leave it. His school referred us to the Learning Resource Center, which is a beautiful and professional center in Egypt. We had a multidisciplinary assessment at first. We answered questions with: “No, No, No… He doesn't have tantrums. He plays with his friends,” and so on. After the parent intake at the Learning Resource Center, they scheduled the child assessment. During this time, we realized that we answered, “No,” but actually, we could have said, “Yes.” He puts blocks into a tower. He follows the lines in the floor. He doesn't answer his name. We called the doctor to correct our answers. Then, at the first examination, my son completed a cognitive screening and later did an autism spectrum disorder test. We were told he is on the autism spectrum with a moderate degree. I had a panic attack. We decided to see many - too many - doctors. Some of them said that he is borderline because of his age or we cannot diagnose him accurately at this moment, we have to wait three years. Another doctor said, “No. He is not autistic at all.”

Does A mother in Cairo have any other advice or experiences A mother in Cairo would like to share?

I am working on research on autism. I work in an IVF center, and we do a next generation sequencing before transferring embryos. My point of research is on sperm DNA fragmentation. The DNA fragmentation somehow is linked to autism, directly and indirectly, through the male age at time of conception. That’s all I’m able to say. It's very interesting, and there is a big correlation. We are working to prove it. We're not there yet. It will take a long time to follow up with kids as they grow up. In Egypt, at the Learning Resource Center, you can attend workshops. They schedule them twice or three times per year, for autism mainly. They have workshops on how to implement speech therapy at home, or guidelines for parenting autistic children, or guidelines for parenting kids with sensory disorders. They also have many workshops for caregivers as well. They are all very expensive. In Egypt, there is no medical insurance, or any kind of support for special needs. You have to pay for it all for your child. All the professional, reputable places are private, and they are all expensive. You can go to governmental hospitals. They will schedule one session per month or one session every two weeks. The therapist himself will forget. This is a disaster situation. But kids with chromosomal or genetic disorders can receive more help than autistics. Autism is not well known in Egypt. People accept Down syndrome or other disorders but they don't know autism. What is autism? What does it look like? They do not understand that his physical appearance is totally normal. They expect him to look different. The Advanced Society for Autism is very, very helpful and inexpensive in comparison to others. The founder of the Advanced Society has an autistic kid who is now 28 years old, so the Advanced Society was established about 28 years ago. They also provide free assessments for parents who cannot afford it. Every two weeks, they have a workshop or a lecture on a certain topic regarding autism, specifically, for the parents of the children in the Advanced Society school. For extra patients like me, they run parenting sessions one-on-one based on your child. And with every reassessment, we get new programs with new targets. They explain what other kids do and what we have to expect from Y. I have made many friends from there, parents in situations approximately the same as ours. We hear the stories from each other and we talk every week at the sessions. But I want to talk with parents whose children are older, to know how life might change for Y. We are almost caught up in cognitive and psychomotor assessments, but we are still behind in the speech. Is he going to catch up? Will therapy always be about catching up, or will it become about supporting him?

What was A mother in Cairo's experience seeking a diagnosis and treatment for Y.?

The first doctor who diagnosed my son, Y., said that early intervention before three years is critical. It will make a huge difference. We went back to his school and gave them all the reports. We set targets and a therapy plan to work through at home: we had two cognitive, two psychomotor, and three speech therapy sessions per week. The nursery also followed up with us every week on a phone call. I attended all the speech sessions for over a year and read books about autism. I recommend Ten Things Every Autistic Child Wishes You Knew by Ellen Notbohm. At 31 months old, he was able to say a sentence of two words: “I want water”, “I want food”, “I want pasta”, “I want pizza”, “I want to play”. But he preferred to say, “I want that,” and just to point without using the word. We would force him by saying, “What do you want? I cannot understand you?” We made great progress. His speech therapist has been helpful. By the second year of nursery school, Y.’s therapist and doctor said he could start to attend a mainstream school without a support teacher. We did not want him to depend on the support teacher for his needs - for play, for eating, for the bathroom, for everything. We wanted him to have a social life with his friends and teachers. But the school still required the support teacher. So, we hired a support teacher. She had worked with kids with special needs before and had over 40 years of experience. She said that Y., in her opinion, is not autistic. He has no tantrums, now. He is talking. He is playing with his friends. He is laughing. He says, “I'm sad because you took my toy.” He loves animals, so he says “I want to play with animals. I don't want to A-B-C,”, or “I don't want to eat now. I want to play in the wagon”. The support teacher said she would leave the class and leave Y. with the teacher. Last year’s teacher was very, very supportive because she had an autistic child. The teacher this year doesn’t want to be as patient or to do the extra effort. But Y. is showing great progress. We didn't stop the sessions. No vacations from therapy. No summer vacations, just two weeks off. We had another assessment this year, a year after the first, and his diagnosis changed from moderate to mild autism. Me and his father are not sure ‘autism’ applies. He has gymnastics two times per week with regular kids, normal kids. His trainer does not know anything about his condition. Y. follows the rules and he asks if he wants anything. He's a little hyperactive but the trainer can manage it. Now we are working on having a short conversation. We can have two or three exchanges. And our biggest problem is echolalia, conversational repetition. It's very silly. When he meets someone for the first time, and that one says, “Hi Y., how are you?”, Y. replies, “Hi Y., how are you?” with the same tone, with the same voice, same everything. If someone asks, “Are you happy today?” Y. replies, “Are you happy today?” with the same exact voice. We don't face this problem at home. We face it with strangers. But it’s also getting better now.

Y.'s Medical Notes

Signs & Symptoms

Diagnosed Conditions

Autism spectrum disorder

Treatments & Therapies

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