Our journey through autism

Posts tagged ‘diagnosis’

US autism journey

Before we had left the US for Saudi I was unable to get insurance or an evaluation for my son, my pediatrician said I could get him evaluated for free by the public school system and that I should add my name to the Marcus Autism Center’s waiting list, maybe by the time it was our turn we would have insurance. So I did that.

I call Marcus and they email me a medical history form to fill out and email back, they add me on the list and say it’s anywhere between 6-12 months. I call the elementary school and they mail me a packet of questionnaires to fill out and mail back, which I did the day before we traveled. This was all at the beginning of Nov 2010.

We come back to the US at the start of April and I get busy with phone calls, I call Marcus and ask what the status of my son’s placement on the list is and they tell me to come in for an initial evaluation by the head nurse for the beginning of May. I call the school and they said they were currently on spring break, so after spring break they schedule him for a hearing test for mid April and an evaluation for the beginning of May. He passed the hearing test, and both evaluations at Marcus and the school were filling out forms, answering questions and observing Bilal while he put puzzles together, or colored, he was asked to throw and kick a ball, to answer questions, follow a story book and the like. Marcus scheduled me for a psychological evaluation for the beginning of August and the school said we would have our first IEP meeting at the end of May. I had never heard the term IEP (individualized educational plan) which has the goals and objectives of my son’s progress according to his current level, what he should be able to master by the end of the semester or year. I learnt later that the IEP is a legal document, where parents may bring an educational advocate or lawyer to attend the meetings, where I can sue the school if I find they were not meeting my child’s needs adequately and that it is a BIG deal. Not knowing all that I attend the meeting bringing Bilal along, where he got bored and started acting up and kinda rushed the whole process, signing where they told me to sign and walking out the door before an hour has passed.  Thankfully I’m dealing with a good, honest and conscious team, they do want to help Bilal improve and reach his full potential, and they did address all his issues and write out a good plan for his IEP.  In June he was scheduled for an OT evaluation where I had to fill out yet another long questionnaire and Bilal was observed holding a pencil, writing, using scissors, building with blocks, doing puzzles, stringing beads and his preferred sitting position and the like, a week later had another IEP meeting this time without bringing Bilal and they just included his OT goals into it. The OT therapist asked me whether I’ve had him tested and have an official diagnosis or not, I told her I was on the waiting list at Marcus and just waiting she told me I should see a developmental pediatrician as they are better trained in diagnosing developmental delays and she suggested a doctor that had a short waiting list. I set up an appointment with her for the next month, a series of 3 appointments.

At the developmental pediatrician its much of the same, filling out forms, going over medical history from pregnancy until today, milestones reached, observing him as he played and did a quick medical check-up of weight, height, head circumference and muscle tone, etc… The second appointment was more like a child IQ test, having Bilal identify pictures, play with toys, copy patterns, building blocks, writing and a repetition mainly of his other visits with Marcus and the school. At this point Bilal had so gotten used to the process he had no trouble separating from us and playing along and following directions. The third appointment was at the beginning of August and it was the results and diagnosis. Even though I was told before that Bilal had mild autism and even though I read several books from the library about autism and could clearly see he had all the signs, having the developmental pediatrician tell me that it was in fact mild autism came as a shock, I was hoping it was anything else, holding on to that chance. She goes on to explain the CARSII (Childhood Autism Rating Scale, second edition) testing  scores, and she gives me pamphlets about autism, the Georgia chapter, flyers from feeding programs, social skill groups, a list of therapists, ABA (applied behavior analysis) therapists, FloorTime, nutritionists, the Toys R Us differently abled toy guide. She suggested doing ABA and maybe following a diet or going on supplements,  and I walk out devastated and overwhelmed, what do I do? who do I choose? she was so serious and made it feel like that’s it, he has autism and you should do all these therapies and live with it. I was lost, and I do the only thing I can do, start making phone calls, I take her doctor’s order for speech and OT therapy to the Children’s Healthcare of Atlanta, I get the blood testing done for Fragile X syndrome and food allergens, he was negative for both alhamdullah, and just read more about autism and all these different therapies both online and from books at the local library.

11 days later I have the results and diagnosis from the psychological evaluation at Marcus Center. According to the testing scale they used he would be diagnosed with high functioning autism and she first started by stating all of Bilal’s strong points and how well he was doing in certain areas and then she went on to explain his weak points, which were mainly social skills and fine motor weakness, he also has speech delay problems but not as low on the scale as his social and fine motor skills. She also suggested a list of therapists, and FloorTime. She said that she didnt think ABA would be beneficial for Bilal’s level and that FloorTime, speech and OT were adequate, she also suggested looking into a feeding program and doing something for fun like Karate, social skill  play groups, scouting, etc. I told her that with this meeting I feel more optimistic than after the developmental pediatrician’s visit, she said that maybe I’ve had time to understand and digest it all, could be, but her method of breaking the news and her suggested therapies made more sense. The Marcus center doesn’t support special diets or supplements as a treatment for autism which made it easier for me to deal with, crossing out something from the looong list of therapies suggested. She told me to apply to the Katie Beckett Deeming waiver and call her at any time for anything. I leave her office feeling pretty optimistic, we were finally done with the whole evaluation process (From Nov 2010 – August 2011), we had 2 similar opinions from 2 different areas of expertise, he was registered for school and we had our speech and OT scheduled and we could start prepared on this long journey ahead of us.

A Dream

I have a couple dreams I wish would happen. I wish for an accurate cause and cure for autism to be known. A lot of parents of autisitc children or any child with a disability would say they “wouldnt change their child even if a cure were discovered” Maybe I havent reached that state yet, weak faith, I dont know, I want a cure for autisim. If my son’s sweet, kind, forgiving nature is a symptom of autism then no I wouldnt want to cure that. But I would love to have not gone through that difficult behavorial phase, not to go through the devestation and stress of getting the diagnosis, I would love to be able to understand my son whenever he told me something, get rid of the frustration from both sides, cure his picky eating and limited diet habits, eliminate the odd humming and pacing. I would like a cure, so he would never be bullied for being different, a cure so that he can have friends and meaningful relationships, a cure to avoid stares or weird looks from others. This is all a dream, I cant go back in time and change anything and if a cure really were discovered or created I dont know whether I would line up for it or not, if it were to happen for real.

As there is no cure yet, this dream seems more attainable. Like I mentioned before, doctors and other parents will tell you once you get the diagnosis to seek a local support group, to talk with other parents that have been there, to find children similar to your child and set up play dates. I couldnt agree more with this. Most parents turn to their house of worship. I’ve read about several church based services, daycare options, playgroups for families with special needs. Here in Atlanta there is a large Jewish Autistic community also offereing the same services. Sadly there is no Muslim autisitic or special needs community for me to turn to. I’ve searched online countless times and find that Islam and autism dont go together for some reason. I’m seeking fatwas (religious decrees) about what my son’s religious responsiblities are, how much is he accountable for and what my role as a parent should be with teaching him his faith. I’m looking for other parents to learn from and see what they’ve done. They either dont want to communicate or are not on the world wide web. Its in the culture of many Arabs or Asians to see a disability as some kind of taboo, not seeking a diagnosis or hiding the child in shame, they lack awareness and its been said a lot that they think autism is  a form of mental retardation, which it obviously is not.

I dream of organizing an awareness campaign with the local mosques, maybe hiring a speaker from Autism Speaks, printing out fliers or brochures, having recources translated into Arabic or Urdu,  explaining to parents what the early warning signs are, urge them to have their children evaluated, that its nothing to be ashamed of, and maybe then I’ll find other families to form relationships with. I also wish that Arab doctors would get the training to recognize the signs to explore the area of developmental science that treating a child for physical illnesses is not enough, for Arabs to become therapists and special needs educators. Islam teaches us to be accepting of all races, ethnicitys, social backgrounds and of course mental capabilities, but sadly they show discrimination, they need to learn neuro-diversity. Its a term I learnt when I started joining the social networks of autism. It means that the same as we are accepting of different skin colors we should also be accepting of the different neuro development of others, of autism, Aspergers, Tourette, ADHD, these are all neuro-developmental disorders. Just like the color of their skin they were created this way and cant help it, its not the parents fault its nothing to be ashamed of. Since my son’s diagnosis, I’ve become more accpeting, when I see a child misbehaving in public I no longer think to myself “these parents have spoiled their child” I say to myself “this child may have some kind of disability and the parents are doing the best they can”.

I’ve met a mother from a Facebook group with a 4 year old son, with suspected Aspergers (she still hasnt received an official diagnosis) she was saying the same about not finding other Muslim parents outspoken with their children’s special needs, about the Islamic community’s lack of awareness. Her son’s application for a Pre-K program at an Islamic preschool was rejected, they said they do not deal with special needs, they said this without even understanding what his needs were. He has since been placed in a private pre-K school, in a regular class with a once weekly special needs teacher checking on him and he’s doing great masha Allah. This mother also dreams of starting an awareness group and maybe one day the both of us can make it work bringing awareness to the Islamic community and helping other parents seek the support they need.

This is the autism awareness ribbon, and April is national Autism Awareness month.

So what is Autism?

You’d think this would be the very first post on this blog, but I wanted to write it in the order in which we went through it, following our journey from start till today. I’ll be linking to several websites for more accurate description of this disorder.

What is autism?

In short autism is a neurological disorder in which a child has difficulty communicating and has social deficiencies, it is a spectrum disorder meaning there are so many levels to the disorder, no 2 children are alike (even twins), symptoms vary, severity of disability varies also the age in which it is first detected varies but its usually between 12 months to 3 years.

It is estimated that autism is prevalent in 1 out of every 110 children, with boys four times more likely than girls to have it. The rate of detection and diagnosis is increasing steadily over the years, this may be due to a better awareness of the disorder and sooner diagnosis than previous years.

What causes autism?

This is the question everyone wished there was an answer to, until today they dont have an accurate answer to it. There are so many factors that may increase the risk and these include:

  • The use of fertility drugs
  • The use of antidepressents during pregnancy
  • Not taking folic acid or prenatal vitamins during pregnancy
  • Gestational hypertension
  • Obese mothers
  • Toxins during pregnancy or early infancy
  • The use of Pitocin to induce labor
  • Pollution
  • Vaccines
  • Frequent infections or use of antibiotics in early childhood
  • Early childhood trauma
  • Genetics
As you can see it could be just about anything, a lot of these were just maybes and in the research phases, and they just increase the risk, some mothers have these symptoms during pregnancy but their children dont have autism while some mothers dont have any of these symptoms and their children have autism. So its still unknown what it could be. The vaccine controversy has been debunked by medical science and the doctor that first published a report saying it was the cause of autism has since lost his license. The MMR (mumps, measels and rubella) vaccine which some parents say caused their children’s autism has been proven to be safe, in my case I didnt give it to Bilal in fear of autism and chose to postpone it to after the age of 3 the autism risk years, but he was diagnosed with autism anyways and I went ahead and gave it to him. I’m still skeptical and worried and will postpone giving it to my other son, just in case.
How is it diagnosed?
You must know and be on the lookout for symptoms and early warning signs. These include limited or no eye contact, limited communication, speech delay, a strict adherence to routine, repetitive behavior, inability to correctly play with toys, toe walking, difficult behavior including outbursts and tantrums. One must also follow closely with a their child’s pediatrician and if any thing is suspected the child should see a developmental pediatrician or child psychologist. They will then observe the child and ask questions about his early development and when milestones were reached and mark it all in different scoring sheets.
How do you treat it?
As they still dont know the exact cause of autism they cant create a cure, there is no medicine, shot or surgery that will wipeout autism, but there are lots of treatments, and the earlier they are started the better the outcome. Some parents even say their child outgrew the symptoms and have lost the diagnosis, but those are rare, the child will always have something, some kind of behavior that fits the spectrum.
  • Therapy: there are so many therapy options availalbe, speech, occupational, physical, behavirol, music, art, water, horse back riding. The one or several you choose will have to be researched and seen if its the right fit for your child, is it covered by insurance, is it worth the time and cost. Its a difficult process choosing the best options. We have Bilal in Speech and Occupational therapy both at school and in private, for a total of 2 hours a week each.
  • Diets: Some parents swear that feeding their child certain diets eliminate a lot of symptoms of autism. The child usually has some kind of food allergy and eliminating that food from their diets improves their behavior, these diets are difficult to follow and usually expensive. The most common autism diet is the GFCF (Glueten free, casein free). We did a blood test and found that Bilal did not have any food allergies and therefore decided not to change his picky diet in anyway other than trying to improve it. Also the Marcus Autism Center doesnt support special diets as a treatment of autism.
  • Supplements: Some parents also swear that giving their child certain vitamins or supplements eliminate symptoms. Some use B vitamins or a mix of other vitamins and minerals. These supplements are beneficial when following a limited diet as eGFCF to ensure the child has a well balance diet.
  • Medication: some parents turn to medication to control their child’s outburts or difficult behavior.
This is just a brief and limited explanation of autism, I suggest you search online, local libraries, doctors and therapists for a more detailed understanding, the resources out there are numerous, but just be on the lookout for those who want to take advantage of a parent’s need to help their child in any way and make up claims of miracle cures. Sadly those are numerous as well. Be careful.
When you do get the diagnosis you will feel a mix of emotions, maybe relief to finally have answers to your child’s odd behaviors, fear, anger, sadness and all that is normal, it is okay to grieve for the child you wished you had, for the future you imagined he’d have. Doctors will suggest you find local support groups to attend, to get help and advice from other parents who’ve been there. Autism is not a death sentence, with therapy these children can grow up to live comfortable and full lives, With just 2-3 months of therapy since Bilal started receiving services we’ve already seen improvements. I’m optimistic for his future insha Allah.
Please check out these links:
All the best of luck.

Hearing the word “Autism”

After I gave birth in the US my husband needed to travel to our home country of Egypt for some paperwork, with my arms full with a new baby and excess stress with dealing with Bilal’s difficult behavior and potty accidents  my husband decided to take him with him for those 2 weeks. It was a relief I could concentrate on recuperating and getting the hang of things and dealing with a new-born and the sleepless nights and such.

In Egypt my husband took an appointment with one of the best speech pathologist in the country and after an initial interview and observation appointment he said that Bilal was normal and that it was our shortcomings as parents for his speech delay, we didn’t talk with him enough and that if we started talking with him and describing out loud his every move he’ll pick up on speech and start talking. He also mentioned not believing in autism and that it was something parents like to label their children with as an excuse for their lack of effort or attention. I don’t know much else about the visit as I wasnt there but I was relieved that the doctor thought him normal but really pissed off for him saying my son’s lack of speech till the age of 3 was my fault, he didn’t even meet me and I’ve tried it all, I tried reading him books, stories, crafts, repeating after him, I’ve done it all and none of it worked.

By the end of the month we had moved back to Saudi Arabia and settled down and started looking for a daycare for him to attend so that he could communicate and play with other children. I had read about a daycare called Little Scholars run by a Saudi women who had lived in the US most of her life and upon moving back to Riyadh and not finding any adequate childcare for her son started this preschool, the teachers were all Westerners, English speakers, her curriculum was very similar to the Bright Horizons methods and I was happy I found something good. Bilal’s teacher was a South African, bless her she was very dedicated to her job and gave Bilal a lot of one on one attention even though we didn’t tell them he had a developmental delay and she didn’t have any special education training but Bilal came home from school happy, humming something or another, he was excited to go in the morning, and his vocabulary was slowly improving with time.

We also started looking for speech therapy programs in Riyadh. The only hospital that had speech therapy was Sulaiman Al Habib Hospital a well-known respectable hospital in the country, when I called for an appointment they told me there was a Saudi, Jordanian or Lebanese, I chose the Lebanese therapist and set a date. We go in for our initial evaluation, she asked us his speech history, number of words, medical history, pregnancy details, observed him for a while and said that he did have a speech issue and we would start the next week for twice a week hour-long sessions. I attended these sessions with him sitting in a chair on the side observing her technique. They played with doll house sets, blocks, cars, play food, utensils, stacking cups, and flash cards, after the first session, the therapist said that she suspects he has autistic features with his constant fidgeting and limited eye contact it would explain his speech delay, she said that if he doesnt make any progress with her than she would refer us to a child psychologist. I remember my heart pacing after I heard that word “autism” didn’t want to believe it and was still playing the denial card in my head pretty strongly, she must be mistaken and I kept repeating all my excuses in my head over and over, only child, non social life, etc… When we got home told my husband about it and he said let’s get an appointment with the child psychologist right away and not wait and see, so we call for an appointment, with the doctor at Kingdom Hospital they had just opened his department and transferred him from Jeddah, we meet him and again the long list of questions regarding my pregnancy, early childhood, medical history etc all the while observing him as we spoke, we stayed there for almost 2 hours. This doctor said that yes he had mild autism or normal with autistic features, he said that the most important thing was that we should surround him with typical peers at least 3 times a week, even if we travel on vacation, he said that we should spend at least 3 hours a day with him with one on one play, trying to initiate communication, give and take, sharing and such like behavior. We told him we were doing speech therapy and he said he didn’t believe it would come to any good and we should explore other methods of communication, like sign language, flash cards or computer assisted speech, I told him that I know that autism’s first treatment was speech therapy and he said you can do it if you want but we shouldnt expect much results from it. He didn’t have other options to share as autism was still something so new in the Kingdom, that there weren’t any facilities in the country to address this issue and if there were they would only be accepting Saudi nationals and not foreigners like us.

I was devastated, autism, my son has autism, how? what are we gonna do? we need to leave the country and move to the US we need answers, therapies, some kind of treatment plan, I was overwhelmed, in shock, depressed I felt it all. I cried a lot and I turned to the Internet, trying to find answers, decided that no it can’t be autism it must be this lesser thing called Pervasive Developmental Disorder-Not Otherwise Specified(PDD-NOS) I made an account on the Autism Support Network (ASN) and spent the whole next day online reading article after article trying to figure out what to do, how to reverse this. The doctor telling us that we needed to spend 3 hours a day playing with him was very difficult as I didn’t know how to play with him, that I’ve tried that, that I was also busy with a newborn and sleep deprived and short-tempered, I needed someone else a professional to play with him and treat him, not me.

For the next 4 months he went to preschool everyday for 6 hours, we tried to keep a twice weekly appointment with speech therapy but that wasnt working, Sulaiman Al Habib was the only hospital in Riyadh that had a speech therapy program and they were overbooked they didn’t have set designated appointments it was a first call first serve system and I was always finding it difficult to get a spot, we ended up going once a week at most sometimes we even skipped a week. I doubt the therapy helped him much but it did give him an idea with what to expect when we went to the US and started our journey there.

His speech did improve over those 4 months, instead of “eh, eh” when he wanted something he would tell us to come, his pronunciation improved slightly, instead of calling juice “oooh” it was now “oooce” small things like that and I was partly relieved saying that these Arab doctors were all mistaken he had these symptoms because of his situation and not because he had autism, and that when we got to the US we would get better answers and better speech therapy and that everything will be alright.

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