Mani’s Mom Experience of Tehran Autism Center

Mani showed no signs of any kind of problems up to the age of one, other than being grumpy and rarely laughing or smiling he seemed perfectly fine. For instance, during the first year, we celebrated his birthday every month, bought candles and cakes, yet there were no signs of any smiles in the pictures, this sometimes even ruined our celebration. The other thing that was strange for us was his extreme enthusiasm for television, music, cell phones, in general any type of digital device, he would get lost in the music or watch TV without blinking.

His communication with us was practically lost between the ages of 12 to 17 months! For example, he would keep on running without acknowledging our present in a park, or in parties he would fade away in the music without raising his head. In one party it seemed as if he was staring at people’s feet and was lost in the music. He had almost destroyed our enthusiasm to spend time with him. I remember in one party he was hugging one person after another as if he had no emotions whatsoever towards his parents compared to strangers. He clearly had no emotions towards anybody. All of these were very strange and confusing for us, but the thing that made us most concerned was his unresponsiveness to his name when we called him. He showed no reaction at all, even if we yelled out his name from one foot away, but if we told him ‘Hello’ (pretending we’re on the phone) he would rush to get the phone from us.

Having these concerns, we started browsing the web and with the help of a pediatrician, found “Tehran Autism Center”. In the first assessment of him at 17 months old, we came to realize the fowling deficiencies:

  • Mani Had no eye contact (or would only establish eye contact very briefly).
  • Did not follow finger indications.
  • Did not point at anything with his index finger (only reached out to the object).
  • Did not have joint attention (when the doctor spun a musical spinner, he didn’t look at the doctor’s face even for once; instead he was lost watching in the musical spinning toy).
  • Showed no reaction to his name.
  • Was restless and tried to leave the evaluation room by kicking the door.
  • Did not play with the toys properly (turned the cars around and spun the wheels)
  • Did not follow the simplest of instructions such as holding a glass of water.
  • Easily left the room in the arms of the staff members and didn’t feel strange at all.

Doctor Pouretemad’s conclusion from the first assessment was that either he was on the autism spectrum or was a digital child. As he further explained, in both cases the treatment was the same, and this was just the beginning of our hard work and stress. For us nothing came ahead of Mani’s treatment. On that very first night we finished the book ‘Autism in Seven Mirrors’ and watched the educational CD. The important point we looked for in the book of “Autism in Seven Mirrors” was whether autism could be cured or not, because as per our understanding (obtained from browsing through websites), autism could not be cured, but reading the book lit up a light at the end of the tunnel and made us start believing and trying, but the question was how?

I remember in the early days, we mistakenly tried to force Mani to turn his head and look at us, but even with the wrong methods like this, we did not leave him alone for a second from the first day not until Dr. Sadeghi’s classes started, which were really great because he taught us proper behavior.

In order not to miss a point, the two of us attended the class, but for the same short time we would also ask for our family’s help, so that Mani would not be without interaction even for a moment, because a sentence from the introduction of the book written by Dr. Pouretamad kept ringing in our ears: ‘The sooner the better, the more the better’

By following Dr.Sadeghi’s instructions the following actions were taken:

  • Complete shutdown of TV and all digital tools in general.
  • Full time interaction and play during the waking hours.
  • Five to six hours of play every day.
  • We posted instructions and different plays all over the walls of the house both for Many and ourselves and our relatives who came to the house to play with him.
  • At the house, if someone was talking, they should have done so by looking at Mani so that no eye contact from Mani would go unnoticed.
  • Any request from Mani that came with crying and tantrum, was remained unanswered.
  • Many had no right to leave the house. He had to stay inside which had no environmental stimulus. (by interaction we mean being present in play).

Dr.Sadeghi’s intervention lasted for two months. Honestly, playing and interacting with a child who had no attention and did neither followed instructions nor was obedient, was really devastating, but it was possible with the help of others and endless effort ( of course, by quitting all of our other activities, and losing 22 pounds/10KG in two months), but our hope was that the Dr. Pouretemad hadn’t given up on our child. Our endless efforts had the following results (In two months and very gradually):

  • Mani wacs following our pointing.
  • Speech was expanded from two words to fifty words.
  • Eye contat had reached an acceptable level.

The most important point for us after the two-month period was that we could grab Mani’s attention, but he still had no reaction to his name. The second assessment was when Mani was 20 months years old; His attention and eye contact was interesting and acceptable for Dr.Pouretemad. He authorized ABA treatment; honestly, we were enthusiastic too about starting the ABA program, only problem was the Center did not have any free instructors at the time, so in order to not lose time we started doing it on our own with the help of the ABA book Doctor Pouretemad had written. To be honest, we realized reading one book is not enough to teach all the concepts, still two sentences was being heartwarming for us. First in ABA this fact remains that tomorrow is always a better day than the current day, and second is that it’s a must for the coach to respect the child’s character. Interaction and non-stop play (without even losing five minutes) continued for Mani until ABA started at 20 months.

To be frank, the PI’s behavior towards Mani was interesting for us because it was filled with hope and enthusiasm and made us optimistic about ABA from day one. The first warm ‘Hello’ & ‘How are you’ from Dr. Pouretemad gave us so much hope. The other thing worth mentioning was the very good instructor the center appointed to Mani that kept our hopes alive (always on time, stayed within the boundaries, very kind and committed). Everything was going well and we still tried to interact and play with Mani. The three hours of ABA class was a chance for us to rest a little bit, but we still followed the program by watching films (for example if there was an eye pointing exercise, we would practice the same activity with him during the day).

After a month or two we started going out shopping with Mani. Every time one of us would do the shopping and the other was busy teaching him things, we wouldn’t wait for Mani to learn cloths and shoes from flash cards, instead we taught him about shops and cloths without a pause.

I remember in one of the meetings held in Shahid Beheshti University, Dr.Pouretemad told me: “The program for a child must be compact, family-oriented and education based”. We kept doing the exact same thing nonstop (either interactive or through visual play). Yet some activities were not possible for us. For example, Mani had learned body parts, even ankles, but still couldn’t say Mom or Dad, many of these were the results of ABA program. After all, after six months of ABA the following results were obtained:

  • Reaction to name.
  • Full use of index finger.
  • Orderliness.
  • Awareness of the environment.
  • Successive words and sentences (purposeful and spontaneous).
  • Correct communication with children’s books and toys.
  • Significant laughter and a desire to connect with peers.

Finally, exactly nine months after the initial assessment, at the age of 26 months, after a thorough assessment by Dr. Pouretemad, Mani graduated from the program.