How it all started

My Journey with Autism

My father was an Egyptian diplomat we lived in Prague the first four years of my life. I hardly remember anything about it and my memories are distorted by stories I heard by my parents mostly about how people stopped us in the street for my very curly hair and about how I acquired my life long nick name Dahlinka which comes from Inka (anything small and cute). We returned to Cairo where I attended 2 years of kindergarten at Victory College. Our next posting was when I was six and that was to Monrovia, Liberia. A lot happened in that posting; mainly a coup d’etat where the presidents head was chopped off in the middle of the street, soldiers barging into our houses at midnight to search and help them selves to food and drink and us crawling on the floor every time we had to walk past a window for random bullets being shot. However, this was not the most exciting thing I remember. The birth of Sarah. …..

Our next-door neighbors were a Lebanese family. The Bazzis. They had two boys Wael and Walid. Walid was my age and we spent every single waking hour together roller skating, climbing trees opening coconuts, looking for snakes and watching the local Liberians shower naked in the street every time it rained. Walids mother, Tant Wafaa finally had her baby. Sarah. Sarah was the prettiest, most fascinating thing I had ever seen. My life revolved around Sarah. I would rush home from school just to spend the rest of the day helping tant Wafaa with Sarah. Sarah was my first realization of how much I was abnormally obsessed and in love with babies. Every doll I had until the age of sixteen (yes sixteen!!!) was called Sarah. To the extent that when I had my own daughter I had over exhausted the name Sarah so didn’t name her that. My daughter today still rolls her eyes every time I’m asked, “What should I name my baby girl” and I immediately reply Sarah!!!!!

After our posting ended we moved back to Egypt where I attended Victoria College.  I usually spent my summers in Agami with my aunt as my parents were frequently travelling and they insisted I spend three whole months speaking Arabic and making friends in Egypt. My cousins were both professional tennis players which meant that the entire house schedule revolved around their tennis tournaments and training. We had trainers from all over the world come and stay with us at my aunt’s house in summer to train the boys. One summer when I was eleven, Hassan El Aroussi and his family came to stay with us. Hassan was at the time ranked number one tennis player in Egypt. He had the most amazing three year old brother Karim. I spent an entire summer babysitting Karim and drooling over his every need. Karim had Down's syndrome. Everything he did to me was adorable. I was hooked for life. It was then and there that I decided that this is what I want to do for the rest of my life.  Like any child discovering herself my mother assumed it was a phase, at the time she was on the board of The Egyptian Diplomats wives association which did charity in very poor dirty areas in Egypt. One of the projects was helping set up a special needs school in the most disgusting of districts. She decided to take me with her so that I see the “real” world and get over my childish fantasy. We had to walk through sewage to reach the poor school. I reached heaven. I had the best day of my life surrounded by the most beautiful children in the world. I saw nothing of the dirt all I saw was happiness and purity. I was even more hooked.  I begged her to go again with her every time she went which unfortunately wasn’t a lot. I kept asking what I had to do to be able to work with these children and I was told study psychology and get training. I was an annoying eleven year old who sounded very odd every time somebody asked me “ what do you want to do when you grow up” I would reply “I want to be a psychologist for mentally handicapped children” my brother who is five years older changed his mind constantly from wanting to be a spy to a diplomat etc but I was adamant. I volunteered every summer in a nursery in Egypt, which was mainly for neurotypical children but had a few special cases, which I was automatically drawn to. My first real volunteer job was at the British nursery in Maadi. I met a boy (who now I realize was Asperger syndrome) called Sam. Again I was in love. Sam was obsessed with pigs every day he would tell me the same story; once there was a pig, he ate he ran, he walked and he slept. I listened to it happily every day. Then one day I got the best compliment I had ever received “ you know Miss Dahlia …. You are the best pig ever!). At the end of summer Jo the owner of the nursery put $100 bill in an envelope and gave it to me on payday. It was my first salary I was over the moon, I had started my career.

We then got posted to London for four years then back to Cairo for two more years. Again I volunteered anywhere that had special children taking more and more duties on, as I got older. Even though I enjoyed working with all disabilities Downs syndrome was my favorite. I could not resist the everlasting chubby baby look and the innocent nature.

Our final posting was to Sydney Australia. It coincided with the time I was due to enter university. I knew exactly what I wanted to “be” I just needed to know what degree I needed for that.  I was not amazing at high school in fact I struggled through a lot of things like physics and all Arabic taught subjects but I found myself in University. I couldn’t believe that I was being graded for reading and writing on such interesting topics. I loved psychology I understood it; finally something made sense. I became a nerd in the lectures sitting in the front row taking annoyingly detailed notes because I simply loved it!!! I scheduled my classes in a way that I had Mondays and Wednesdays off and received proper job training at Wairoa special needs school. I graduated with a high distinction average and a double major in Psychology and sociology. Education became my “thing” The post graduate department was bombarding me with correspondence to start my masters or any post graduate course but unfortunately it was time to go back home.

Chapter two

Egypt real life, real job.

The return to Egypt was no piece of cake I had to leave behind wonderful friends, boyfriends and a life I had grown accustomed to. University age is the time you discover your self and make real friendships and bonds. I did that and enjoyed being independent with my first car driving up and down Australia doing any paper work that I needed done easily and simply with no issues alone.

It took me twenty-four driving lessons and failed the computer exam once before I got my driver license in Sydney. In Egypt I woke up and found it on my side table apparently my aunts driver had it done!

I tried to ask my brother who has the “right of way” in a round about the person coming from your right or left he replied “ the bigger car”. Everything was different but nothing frustrated me more than the inability to get my paper work done alone and smoothly like I was used to. All my degrees had to be translated and approved, my national ID had to be issued everything that could have been done in a day was done in a month of useless lining up and insane running around and of course I had to be accompanied by a man (usually my aunts driver) so nobody would “bother me!!!!”

This poor driver took me to all the mental health hospitals in Egypt and would lock himself in the car waiting until I met everyone there was to meet trying to figure out what I should do. Everything I saw was related to adults or was not what I had in mind. Months had passed and I still couldn’t find somewhere to work. I felt my brain was rotting away so I used to do mathematical equations to “keep it functioning”. I decided to do my masters since I couldn’t find work. I went to AUC, which seemed as the obvious choice since I hardly read or wrote any Arabic but to my disappointment they had no post graduate courses in Psychology. I asked and asked around in the Egyptian universities until I was finally told to go see Dr Louise Melaka the “ founder of Psychology in Egypt” I was told.  I found out where he was lecturing and went and waited outside the lecture hall for him. As he walked out of the lecture theatre students surrounded him as if he was royalty. I built up my courage and walked up to him and told him “good morning my name is Dahlia Soliman I was referred to you by Dr. As I wanted to take your permission to hand in my Masters dissertation in English.  Everybody went quiet as his majesty spoke: “ why, what makes you thing that you are such a rare thing in this world that we should change the rules for you, what makes you thing that you have anything of value to contribute to the world of psychology in Egypt? go ya shatra study Arabic for three years then come back to me then” . I froze. I couldn’t breathe. Everyone in the hall was looking at me and I was about to burst into tears. I had just returned from Australia so I still believed I had rights and all I could remember was how the postgraduate department was chasing me. I took a deep breath and told him “ you know what I have never seen an educator put down a student this way you are supposed to encourage not depress me. My voice kept shaking but kept getting louder and louder…” and yes I am a rare case and yes I will contribute to the world of psychology in Egypt but definitely not under your supervision as that will not honor me” everyone one went extremely quiet and stopped breathing and looked at me as if I was a nut case. He simply burst into laughter and said “ inty sha2eya awi give me your number and I will see what I can do” so I gave it to him and ran crying to the poor driver locked in the car waiting for me.

By the time I reached home I was ready to pack and leave this whole depressing oppressing nation.  To my surprise ten minutes after I arrived home the king himself called me! He said I arranged for you ya sha2eya to go and try and attend an undergraduate class and meet with the head of psychology at Cairo University. I quickly transformed into one his followers “ thank you sir I’m so grateful”

My mother came with me to Cairo University where we met the head of psychology department. He was very keen to have me (due to the kings recommendations) and walked us to an undergraduate lecture to see if I could follow. It was Chinese this was all stuff I had supposedly taken before but I quickly realized that studying in Arabic was not an option I didn’t even know what the word theory was in Arabic. Man noticed the ignorance in my face and made the main lecturer sit aside and continued giving the lecture himself using 60 percent English terminology. The rest of the students started laughing at him saying out loud “what is wrong with you”.  I realized that this wouldn’t continue and was not going to work.

I finally heard of a private special education school, which was recently opened up by a family who had a special needs daughter and had just returned from the UK. This to me sounded very promising. I called them and an interview was set.

I immediately loved the school and the owners. It was clean it was full of special children and it was a private school so the bubble I needed to work in at the time. I immediately got hired as school psychologist, which was a bit odd for me because I was sure I needed more than a Bachelor for that. I got literarily “thrown in” and expected to work. I had no direct boss so I had to figure things out myself. Now I look back and think that this was probably the biggest learning experience of my life. I stayed there for four years and completed along distance dyslexia diploma over two years with the Bangor dyslexia institute in the Uk. One day the owner of the school called me and told me that the British lady who was supposed to fly in to handle the baby class will not be able to make it so I had to teach them as well as run my dyslexia groups and do my work as school psychologist. I said why not might be fun. I separated the children into two group; autism and non-autism. I started reading and set up an autistic unit. I travelled to North Carolina in the summer and did a course on neurodevelopmental dysfunctions then I attended an intensive TEACCH course in the UK, which taught me exactly how this unit should be run. I came back and set up everything exactly like I learned. I got amazing results with the children. I eventually left the school because I got married and was supposed to travel to France with my husband and also because of a lot of ethical issues related to money and diagnosis that did not sit well with me and turned my face into a pizza (pimples) from the stress.

Chapter 3

The set up of The Egyptian autistic society.

The trip to France got cancelled and I stayed home. Parents of my old autistic students kept calling me and bringing their children for extra sessions in my newly wed apartment. It soon turned into a waiting room for parents while I worked with their children. The numbers kept getting bigger and bigger. I started something called the Saturday social club where I had would hire a bus and take autistic children on trips every Saturday. I started hiring teachers to assist me on these trips. I then started the “Wednesday work shops” where every Wednesday I would take these children to my grandfather’s garden and do painting, woodwork, sewing and cooking. The children kept increasing in numbers and I could no longer keep them at home. My grandfather who lives in a villa in Maadi gave me his basement I turned it into a classroom that opens straight onto the garden and fixed the toilet next to it.  I started getting a lot of negative statements from other centers etc. so I decided I needed a legal framework for this class I had. I asked around and was told that anything for special needs is under the auspices of the Ministry of Social affairs so I had to get a license from them for an NGO association. I had to go the the local office of the social affairs several times. My mother came with me dragging me out screaming everytime  stunned by their mentalities and lack of competence and interest in completing anything. It was so frustrating. She explained that this was not the way things were done in Egypt. She on the other hand had their names memorized and the names of their kids and birthdates. She asked them about their families and did a lot of what I believed was useless time wasting conversation. I later learned.   I filled out the paper work (which was not fun) and was asked to apply for a name. I was always inspired by the National autistic society of the UK so I decided to call it the Egyptian Autistic society because I wanted “Egypt” and the word “ Autism” in it. Months of Papers back and forth fro the Ministry because they did not like the name and found it too depressing they wanted me to called it a “cheerful” name like the red flower I told them that sounds like a cabaret to me and the title should represent what we do for international correspondence purposes. Months of waiting for approval but nothing. Meanwhile one of the mothers that had her son in my autistic unit at the old special needs school opened up her own center and asked me to work there. I was very excited thinking I can recreate the TEACCH method I had learned over the summer.  Forty-five minutes after starting my new job I wanted to resign. I was placed in a room full of children in wheel chairs who needed to be fed and changed along side hyperactive children and many many mixed disabilities so I felt like a combination of nanny and baby sitter. I spoke to the owner asking her if I could separate them and do what I had in my mind she said no. I never went back. Luckily (destiny) a few days later I received my license from the Ministry. I was finally official. I started throwing bimonthly meetings and conferences for parents and inviting guest speakers all in my grandfathers “salon” . The meeting grew bigger and more formal as did the amount of children enrolled.

                                        The story of Khaled

In 1995 I diagnosed Khaled with ASD. He was just around two years old and I was twenty two years old. His father was a medical Doctor at the Egyptian Army he was completing his Masters at the time.  I could tell by his reaction that he did not approve of my diagnosis ( by then I was used to getting the “ you are not even a medical doctor you are just a spoilt girl " look.

I told his father that I believed that Khaled was a mild case even though he showed no signs of speech developing in the near future and that one day he would be able to read, write and have many skills. His father responded negatively. Life became quite difficult for khaled’s family at the time. His father failed his Masters and tension was growing at home. Meanwhile I enjoyed discovering Khaled. He had very high visual skills but weaker than normal verbal skills. He could not repeat sounds accurately and could not say any words other than “bish”. He was as punctual as a clock ; everyday at 2.45 pm on the dot he held his bag and started crying ready to go home. He banged his head on the floor, wall or his fist to express his frustration or communicate his disapproval. I quickly realized that when the head banging was ignored (as hard as that was for me) it started to decline. He started “threatening” to head bang if he didn’t get his way so I ignored him more until it disappeared. Khaled was used to people running to his rescue out of fear of him hurting himself so he quickly learned that this was a powerful tool of communication. I had to give him an alternative method of communication so I used a picture board on his desk and only responded to that.  Khaled responded to “give me” commands of various pictures very well (receptive language) but did not repeat accurately or recall any sounds or names of objects (poor expressive language). He responded very well to commands accompanied by visual prompts such as hand gestures, so I decided to associate each sound in the alphabet to an action and to a picture (use more visual prompts and actions) . For the “ a” sound I put my two hands around my mouth as if calling out to someone. To my surprise he did it, then for the “b” sound I put two fingers on my lips side ways as if to show him where to produce the sound from. It worked brilliantly with him and it made sense. He needed to “see” the sound not “hear” it and he needed more than one sense to learn this : visual and auditory. Soon we were doing spelling tests via our odd sign language.  Khaled wrote and read before he spoke because finally the fact that each letter produces a different sound which is combined to make a word made sense to him when he saw it visually. Eventually I could teach Khaled anything as long as it was written….. we found his entrance point.

I will never forget a comment I had from Khaleds father in the following parents’ meeting; he told me (the same man whose life was collapsing the previous year) that he felt he was much luckier than other parents of “normal” children. He said he felt so much joy everytime Khaled accomplished the tiniest of progress  like holding the pencil correctly, which he wouldn’t have felt if Khaled was “normal “. That was one of the most amazing things I had ever heard and a wonderful change in perspective. Hanan Khaled’s mother was a compassionate dedicated mother. She only had Khaled and his 8 year old sister Kholoud. Khaled was obsessed with animals and Hanan was obsessed with Khaled. Hanan used to wake up at five every morning to drive Khaled to the zoo before school so he would come in a good mood and benefit. She used to tell me she spent the days sniffing his clothes while he was in school.  I loved her and I grew very close to the family (I was too young too comprehend professional boundaries- I still don’t !) . We all used to give her a hard time about how much house work she used to make Khaled do. Khaled was four and she already had him washing his own socks, getting his breakfast out of the fridge and watching tv, and unloading the shopping bags into their correct storage places. But nothing stopped her she taught him to separate whites from colours before doing the washing and so many skills much higher than his age level.  Hanan and her husband decided to have more children to support Khaled as he got older and take some of the resposability off Kholoud later on in life. It was not an easy decision as they were worried that they could have another autistic child but fortunately they had a beautiful baby boy called Omar. When Omar was one and a few months, Hanan fell pregnant again. Something went wrong during her delivery and she passed away shortly after giving birth . Life stopped. I did not understand it. Until this day this story shocks me. It makes me not understand anything in life.  I visited her in hospital when she was in a coma and kept looking at her while her husband kept measuring her temperature and pulse and checking her pupils . I will never forget that image.  I did not go to the funeral . I had nothing to say and no support to give... I was stunned. I spoke to her husband daily for hours asking about the children and listening to how he felt. He was a hero. He named the new baby girl Hanan. He reduced his working hours and spent most of the time with children. He spent the nights bottle feeding the new born, made sandwiches at 5 am for the kids to take to school, consoled a two year old who was still looking for his mum, a teenager who asked him if now she was going to develop a complex like the children who lost their mothers and an eight year old boy with Autism.  Khaled became very routine oriented since a major thing in his routine was disrupted. He needed to regain control of the world by organizing everything and putting everything in place like a person with obsessive compulsive disorder when he gets stressed. To the extent that he wanted his father to sleep facing a particular direction and he would push each sibling back into their room as they “belonged” there. However, I remember asking his dad how he was coping with him and he said that because of all the skills Hanan had taught him khaled was the easiest to handle as he was quite independent. It was as if she knew.  

Khaled continued to do well and was mainstreamed in an international school in Egypt. He was accompanied by several shadow teachers but the most significant two for him were Abeer who stayed with him for a long time and understood him well and Kim who was an American lady who briefly worked with Khaled.  After a few years all the family interefernce became too much for Khaled’s dad so he decided to pack up all the kids and move to the Uk . He sold everything in Egypt so it was a one way move. Eventually they all got settled into their new schools and he found work. Kim kept in touch with the family and visited frequently and years later Kim and Khaled’s father ended up getting married. The children loved her and most of all she was Khaled’s god sent angle. Kim pushed and pushed until Khaled made it into college where he is right now. Kholoud graduted from Oxford University as her parents had always dreamed for her. Somehow life made sense ; Khaled ended up getting better opportunities than anyone had ever imagined. Maybe Hanan knew all along .

The main reason I never considered going into medical school although I love science and I love medicine is that I have an abnormal fear of blood. Yes I have a phobia. I have fainted before just by having a doctor take a sample for testing purposes. Twenty percent of children with Autism develop epilepsy. No one knows why but it usually comes around puberty. I had a young boy called Yehia who was the funniest, friendliest child ever. Yehia had severe epilepsy since the day he was born. He had always been on very high doses of anti- epileptics and we were all very aware of his seizures. We knew that if the weather was hot then he was likely to have a seizure, if he was cognitively aware and not “doped out” then his medication was reduced and again he was likely to have a seizure. All we had to do was put him on his side in recovery position and wait for it to pass. It usually did and he got up after it with no problem. This was probably two to three years after I graduated from university and it was at the special needs school where I was the school psychologist. Yehia wasn’t really my responsibility during the day but I loved spending time with him he always made me laugh.  So one day we were inside while everyone else was out at break ( I wanted to keep him indoors as it was very hot) and Yehia got a severe nose bleed. This nose bleed quickly turned into blood clots which blocked his breathing he suddenly went into a severe seizure.I may have screamed for help I don’t remember but I didn’t even have a chance to freeze or go get help I just held him up with one hand over the sink and shoved my fingers up his nose clearning the blood out quickly . his seizure was so strong this time that I could hear all his bones shaking against eachother. I managed to clear the blood out and put him in recovery position by then other members of staff had probably heard me screaming and came. He woke up a few minutes later I was in a corner on the floor next to him and looked at me and said “ whats wrong with you?” in a fuuny concerned voice. I laughed and laughed then locked the door on me and sat crying on the floor the rest of the day doubting I can continue in this field.