Education
Hello, I am Autism Aware
Published
For those of you in Dubai, the Dubai International Peace Convention was two weekends ago, and I was an exhibitor there. Oh, yeah. And I had stickers. And I stuck them on people.
They said “Hello, I am: Autism Aware” and in order to earn one, you had to be naïve enough to be disarmed by my cheesy grin and then ambushed with “So, what do you know about autism!”
Then, if you were patient enough to nod through my five minute presentation/tirade on what autism is, why early recognition is important, and how to recognize it in a child as young as two (Poor eye contact, less than six words, lack of social interaction) and if you nodded at all the right bits and laughed at my attempts at funny bits, you got a sticker. Whether you wanted one or not.
(When a child isn’t talking by a certain age and the parents get worried, people typically say: Give him time! My friend knew this guy who had an uncle who didn’t talk until he was six, and now he’s a ninja-neuroscientist-pastry chef-professor! *rimshot* But actually, any child who isn’t talking by the age of two should have autism ruled out before any more time is allowed to pass.)
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It was cool actually, people would come to the autism awareness stall because they had seen someone else wearing a “Hello, I am: Autism Aware” sticker and they sought us out because:
A) They wanted a sticker too -or-
B) They didn’t know was autism was but they wanted to find out -or-
C) They knew very well what autism was and wanted to compare notes
I met school kids who giggled and slapped stickers on each other, parents whose children were in other centers, teachers who were sure they had undiagnosed cases in their own classes, doctors who were not sure who to refer children to, and lots and lots of young mothers who I accosted with a flier that had some warning signs of autism divided by age from 18 months to four years.
I also met:
- Dr. Zakir Naik, briefly, surrounded by his entourage, as he made the rounds of all the stalls at the convention. He politely listened to my autism awareness tirade before the entourage juggernaut rolled onward to the next stall. He seemed like a nice man, MashaAllah.
- The mother of a nice young volunteer, who came to the stall out of politeness and left somberly with a “Signs of Autism” checklist in her hands with way too many underlined to take to her own non-verbal, hand-flapping, head-banging nephew.
- A man who, when cheerfully ambushed with my typical “So, what do you know about autism!” replied with a slow blink, some agonizing moments, and the shaky reply of “I know that it destroys your life.” He turned out to be an autism parent.
- A little boy with Asperger’s syndrome and his mother. He didn’t say a single word, and he stood reading a book the entire time his mother and I chatted, but he did look up and laugh at my one ninja-neuroscientist-pastry chef-professor joke before re-immersing himself in his book.
- A father who was just passing by when he saw the word autism and stopped because he had just been told the day before by a concerned friend that his son might have autism. He got the ‘Where to get help’ flier.
My duty at the Dubai International Peace Convention was four hours on Thursday and then nine hours on Friday and twelve hours on Saturday. It was emotionally intense, not just because I had to talk non-stop, but because I met so many people with terrible fears that were completely founded. SubhanAllahiWabihamdihi– my son has progressed to the point where we have hopes for him being able to get through primary school, InshaAllah. Most other parents get the door slammed in their face right from KG and it is never opened to them again, and here I was telling them: There is hope! But not for you, because your son is ten now! And hope has a waiting list! And based on the misery in your eyes, you couldn’t afford it anyway!
Allah u Akbar. A person who never speaks won’t be held accountable for lies, but it is agony for the parents every single day. Their child will never go to school, they will grow into an adult who cannot provide for their own needs- forget having a job- will they ever be able to dress themselves?
Let that question mark hang there for a moment, and imagine an old widow trying to care for an adult male who communicates by hitting, punching, and breaking- who collapses at home one day and no ambulance is called because her adult son can’t speak let alone use a phone.
When is she discovered? In what state will her son be at that time? Who among her relatives will take care of an adult male who cannot bathe himself? What institution will care for him? If he runs out of the house, confused by the noise and the ambulance and the strangers, who will chase him down and bring him back home to safety? If he fights the well-meaning strangers trying to take him home, how many of them will stay calm and keep trying after the first time they’re hit in the face or bitten in his panic? A better question to ask might be: what color car will hit him first?
These are the questions I ask myself when I meet other families with autism, and the only light in the darkness of that scenario is that Allah knows best.
He does. Allah knows best. And we suffer in this life so that we can be rewarded in the next, but never beyond what we are able to cope with. Allah will care for the grown man with autism, and nothing will happen to him that Allah has not willed and has not deemed to be good for his status in the Akhirah. I was asked, by one woman at the conference, how I could even think of having other children (I have three) after my first child was discovered to have autism. I told her that it must be good for him- maybe if my son didn’t have autism he would have been a thief, a rapist, or a murderer. Or worse- he could have been a very successful and handsome intellectual sort of young man who fell in love with the dunya and left Islam to become one of its enemies because it was easier and more glamorous than being one of its defenders. There are worse things than being autistic- getting your account in your left hand on the Day of Judgment is definitely one of them.
My son was kicking the wall last night at 10:30 pm. I went into his room and asked him if everything was alright. He sat up in bed and said, in his funny robotic way:
“I have – a –secret – Idea.”
I smiled in the dark. My son is verbal, Alhamdulillah, and after years of wondering what he was thinking when he sat staring into space for hours, I sometimes get to find out.
“You have a secret idea? Really? What is it?
“I’m thinking- what is charity? Is it an idea?”
Two days ago, one of his ABA therapists was helping him with a worksheet in which he was supposed to sort a pile of nouns into categories- people, things, and ideas. A fireman is a person, a car is a thing, a discovery is an idea. Charity was not in that list.
“Yes, charity is when we give things to other people to make Allah happy with us. It’s something we do, but it’s not a person or a thing. It’s an idea.”
“Ok.”
“Good night Khalid.”
“Ok.”
He dives back onto his pillow and I can hear him kicking the wall again later, but I know he’s awake because he’s busy sorting nouns in his head. On some nights I go into his room hours after he’s “gone to bed” because I can hear him talking to himself, and he’s reciting Dubai street names and road numbers. (Two seconds ago: “Baniyas road. Baniyas. Baniyas road.”) I went into his room one night at 11 pm and asked him if he was feeling alright because I could hear him flipping around in bed.
“Khalid, do you need help?”
“Yes, where’s TECOM?”
“Near Barsha. After Mall of the Emirates. Before Knowledge Village I think. Good night.”
“Ok.”
He’s asleep right now, and in our little home, all is the right with the world. Throughout Dubai, and the UAE, and the rest of the world where one in eighty-eight children are diagnosed with the nearly crippling developmental delay of autism all is still right with the world.
For Muslim parents, autism is the opportunity to have the false pretenses of societal expectations and wealth and family pride and superiority forcibly stripped away from the core responsibilities of what it means to be both Muslim and parent. You don’t need to worry about keeping up with the Joneses- they stopped inviting you over after that meltdown one time and don’t call anymore once they found out your son had special needs. Trust in Allah and take care of your child. His disability is a gift, because accountability is harsh. Worry more for yourself than for him and whether you are able to justice to your child without growing to hate what his label stands for, and have faith- really- in Allah’s plan without allowing Shaytan to plant the seed of bitterness in your heart with what Allah has willed for you.
May Allah have mercy on us all, and give us the patience and Taqwa to see even our disabilities as opportunities for Jannah.
Please speak with a specialist immediately if your child:
By 18 months:
- Doesn’t point to show things to others
- Can’t walk
- Doesn’t know what familiar things are for
- Doesn’t copy others
- Doesn’t gain new words
- Doesn’t have at least 6 words
- Doesn’t notice or mind when a caregiver leaves or returns
By 2 years:
- Doesn’t use 2-word phrases (for example, “drink milk”)
- Doesn’t know what to do with common things, like a brush, phone, fork, spoon
- Doesn’t copy actions and words
- Doesn’t follow simple instructions
- Doesn’t walk steadily
- Loses skills she once had
By 3 years:
- Can’t work simple toys (such as peg boards, simple puzzles, turning handle)
- Doesn’t speak in sentences
- Doesn’t understand simple instructions
- Doesn’t play pretend or make-believe
- Doesn’t want to play with other children or with toys
- Avoids or doesn’t make eye contact
- Loses skills he once had
By 4 years:
- Has trouble scribbling
- Shows no interest in interactive games or make-believe
- Ignores other children or doesn’t respond to people outside the family
- Resists dressing, sleeping, and using the toilet
- Can’t retell a favorite story
- Doesn’t follow 3-part commands
- Doesn’t understand “same” and “different”
- Doesn’t use “me” and “you” correctly
- Speaks unclearly
- Loses skills he once had
The signs of autism- excerpted from The Mayo Clinic website:
Some children show signs of autism in early infancy. Other children may develop normally for the first few months or years of life but then suddenly become withdrawn, become aggressive or lose language skills they’ve already acquired. Though each child with autism is likely to have a unique pattern of behavior, these are some common autism symptoms:
Social skills
- Fails to respond to his or her name
- Has poor eye contact
- Appears not to hear you at times
- Resists cuddling and holding
- Appears unaware of others’ feelings
- Seems to prefer playing alone — retreats into his or her “own world”
Language
- Starts talking later than age 2, and has other developmental delays by 30 months
- Loses previously acquired ability to say words or sentences
- Doesn’t make eye contact when making requests
- Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
- Can’t start a conversation or keep one going
- May repeat words or phrases verbatim, but doesn’t understand how to use them
Behavior
- Performs repetitive movements, such as rocking, spinning or hand-flapping
- Develops specific routines or rituals
- Becomes disturbed at the slightest change in routines or rituals
- Moves constantly
- May be fascinated by parts of an object, such as the spinning wheels of a toy car
- May be unusually sensitive to light, sound and touch and yet oblivious to pain
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Zeba Khan is the Editor at Large - Special Needs for MuslimMatters.org, as well as a writer, speaker, and disability awareness advocate. In addition to having a child with autism, she herself lives with Ehlers-Danlos Sydrome, Dysautonomia, Mast-Cell Activation Disorder, and a random assortment of acronyms that collectively translate to chronic illness and progressive disability.
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Hannah
April 30, 2012 at 2:19 AM
I love your conversations with Khalid! Thanks for the valuable info. jazakAllah khair. do you know where I could look for possible causes and theories of autism?
Rkundi
April 30, 2012 at 3:55 AM
Hannah – I am also very interested in finding The causes. From what people have told me, seems like a true cause is not known. Howevers, theories abound; i have depfinitely read about a correlation with age of the mother (older women are more prone bear an autistic child). Anyone else with other scientifically rooted causes, please do add to this thread.
Timor
April 30, 2012 at 5:03 PM
There will be a conference in Chicago about Autism at the end of May which I will be attending. The title of the Conference is “the Dawn of a new Decade, from Truth to Treatment”. You may find more info on it on this website
http://www.autismone.org/
Zeba Khan
May 1, 2012 at 1:10 PM
At the moment sister, AllahuAalim. :) Some sub-types of Autism, like Fragile X syndrome, have an identifiable genetic link, but the others are still a mystery, despite what people say about diet, vaccines, and toxins- we can identify influencing factors but so far no cause. Apart from Allah willing that there is good in it for us. :)
StrandedMom
April 30, 2012 at 10:18 AM
Thank you sister. I love your articles and your blog! Salams and Jazak Allah Khayr! From your sister in Islam and autism!
Abez
May 9, 2012 at 4:20 AM
>>>hugs<<< Wa Iyakum my sister in Islam and Autism
Uzair Sarmast
April 30, 2012 at 12:36 PM
As salaamu Alaikum
Jazakallah Khair for sharing this important information with the general public; everyone either has children of their own or knows someone who does. Let me know if there’s anything I can do to help your efforts.
Uzair
Mraamohamed
April 30, 2012 at 2:02 PM
Hello, I was there I was at the conference and it was great you had some really good info, and I am sorry to say I did not get a sticker.
Abez
May 9, 2012 at 4:21 AM
I am terribly sorry! I had to peel the backs of the stickers off in batches and put them on the back of the podium, some people who I spoke to came in between sticker batches, and you must have been one of them. Please accept my apologies.
Yasmin
April 30, 2012 at 2:39 PM
Jazakallah khair for sharing some of the key warning signs of autism. Inshallah, Allah (swt) will reward you for all of your hard work!
ummhafs
April 30, 2012 at 2:42 PM
very touching article. i love your son and his innocence. you can see that Islam is alive in his heart. May Allah make Islam your son’s only way of life; may he be able to deliver the message of this beautiful deen with his innocent robotic way of talking or as an eloquent da’ee. and may he truly learn what charity fi sabilillah is so that it may be a witness for him on the DOJ. May Allah increase your status to that of our righteous mothers, who also supported men through the most trying of times.
Tallat Choudry
April 30, 2012 at 10:41 PM
Nutritional deficiencies result in neurological imbalances.This can be corrected by eliminating all sugars,white flour products and junk food. Eat fresh, bright colored fruits and vegetables, whole grains, legumes and deep- sea- salmon. Supplement with natural vitamins; eat organic and avoid anything that is boxed,bottled or canned to prevent chemical additives such as preservatives,food colors,etc.Chemicals even in minute quantities act as hormones in the body and could trigger growth of cancer cells.Sugar makes the body weak and feeds bacteria.
Tallat Choudry
Naturopath-Nutritional Consultant
Timor
April 30, 2012 at 11:55 PM
Mr. Choudry I agree with you even a normal person should avoid junk food, process boxed foods etc. but I disagree if you were referring the cause of autism is nutritional dificiencies in persons brain. You see my son was diagnosed with autism 2 weeks after his 2nd birthday. We tried every died that was recommended by so called experts in their fields. We even tried casein free, dairy free, yeast free and Glutin free diet for 9 months, no results. We even give up all fruit drinks only water. He is now 3 and half years old tall handsome. But he has no speech, does not socialize has’nt been potty trained. I guess what I’m trying to say is no one except Allah knows what causes this disease and so far there is no cure for it. But I have read many stories that people under the spectrum has lived a normal lives and even gone to college and gotten married. With Allah’a help iA i believe my son will be ok too.
Aishah M Nasarruddin
May 1, 2012 at 12:36 AM
thank you for raising the awareness on autism sister. May Allah reward you.
Abu Omar
May 1, 2012 at 1:14 PM
Thank you for this article. I am also the parent of an
autisitc son and the difficulty and pain that we have experienced as a family
is simply beyond words. However, as you
mentioned, there are deep spiritual lessons contained within these trials and
my relationship with Allah is stronger and truer because of this experience. To be tested through one’s children is a
common motif in the lives of the greatest Prophets, from Ibrahim to Yaqub to
our Prophet Muhammad (alayhim-assalam), and Allah’s wisdom in testing us in this
manner is truly deep and profound. I have personally found tremendous comfort
in surah Yusuf; its portrayal of a grief stricken father who never gives up on
his son or his Lord has lessons for us all.
I also wanted to say a few things regarding current
trends regarding autism treatment which were not mentioned in your article. I
do not know if it is because you do not support these trends or if it is because
you are not aware of them, but I’ll say my two cents and leave it at that. When
my son’s autism diagnosis was finalized, I was in the fortunate situation to
have a job where I had a lot of free time (tech industry) and I began to
basically pour nearly my entire waking hours into reading about autism, reading
about 8 hours a day of various articles and books, and sometimes over 2000
emails from message boards and support groups. My mind was not able to think
about anything else. That period of research unearthed a few very important
things, the most important being that some kids have been able to make a full
recovery from autism; not just work within the framework of the illness (“work
with it”) but rather escape all the effects of the illness itself: their
sensory perceptions, their social interactions and empathy, and even their
muscle tone (hypotonia is common in autistic kids) and balance all normalize.
The treatment that lead to these results revolved around several concepts, each
tailored to fit the puzzle that each child’s manifestation of autism
represented. Keep in mind that I am not a medical doctor, but all of the concepts
expressed below do come from doctors or medical researchers. Most if not all of
these ideas are disputed and it’s up to the parent to decide which side of the
debate they support.
1. Diet. This is a common theme amongst kids that have been
successfully treated. A large number of autistic kids are intolerant of casein
(found in milk) and/or gluten (found in wheat), proteins that share a similar molecular
structure. This inability to digest these proteins leads to the presence of
casomorphin in the body, a peptide with opioid properties; basically the kid is
“stoned” with a morphine-like substance. The Gluten Free Casein Free diet
address this problem.
In addition, many
kids suffer from a strong presence of fungal and “bad” bacteria in the gut,
which is fed by sugars and simple carbohydrates. A diet that eliminates these substance, such as
the Specific Carbohydrate Diet, addresses this. My son regained eye contact
after we implemented a GFCF and SCD diet and his sociability improved.
2. Gut health. As I mentioned, many kids, my son included,
suffer from infestations of fungus and bad bacteria in their GI tract, and also
an absence of good bacteria. These can be treated with oral anti fungals, diet,
and probiotics to restore good gut flora. My son’s stools and good flora
improved tremendously because of this and he also stopped itching and
scratching himself, but there did not seem to be any behavioral improvements.
3. MB12. MB12 is a form of the B12 vitamin and it is
essential in what is called the methylation cycle, a very important detoxification
process that occurs in the body. I can’t recall a lot of the details regarding
this topic, but MB12 is a very important facilitator in this process. This
treatment was a key part of the recover for many children, but my son had no
response. Dr.Neubrander in New Jersey is a pioneer and perhaps the foremost
authority in using this treatment (in combination with diet and supplementation)
and you can see many testimonials on his site.
4. Anti-virals. For many kids, my son included, there are
indicators of a hidden viral infection or exacerbated immune response to a
viral infection. My son’s rubella titers were well beyond the levels that would
indicated immunity post vaccination. For some kids, treating with anti-viral
drugs leads to full recovery, however my son did not seem to benefit from this.
For a truly inspiring and detailed story of one boy who recovered fully from
his autism as a result of diet, supplementation, and anti-fungal and anti-viral
therapy, look up Stan Kurtz. I can’t recommend his blog/website enough. He
includes great video documentation.
5. Chelation. This is less common, but still prevalent and
we recently discovered this problem in our son. Some autistic kid have
abnormally high level of toxic metals in their bodies, such as mercury, lead,
and arsenic, all of which have extremely detrimental effects on neural function
in adults, let alone developing babies and toddlers. Possible sources of
contamination include lead paint and dental amalgams (“silver” fillings) made
with mercury. My son’s doctor was very surprised to find a high level of
mercury in my son and we began chelation, which is the administration of a drug
that binds to toxic metals in the body, allowing it to be excreted through
urine. After the first round of chelation, my son responded to his name for the
first time and his sociability has improved significantly. We are currently
undergoing this process.
That’s all that I can recall off the top of my head for now.
My son was diagnosed at 2 and is now 4 and we have seen some improvement that
we are trying to be thankful for. Like I mentioned, all the ideas above are
disputed, particularly by the mainstream medical community, but I feel that the
theory and results of these treatments are solid enough to make worth looking
into. If interested in investigating these ideas more, I recommend checking out
the websites and videos of the following 3 doctors:
Dr. Jerry Kartzinel, in New Jersey.
Dr. James Neubrander, in California.
Dr. Kenneth Bock, in New York. Great youtube videos.
And like I said, I have tremendous admiration for the website
of Stan Kurtz.
I recommend the following books as starters:
1. Healing and Preventing Autism: A complete guide by Dr.
Jerry Kartzinel
2. Healing the New Childhood Epidemics by Dr. Kenneth Bock
In terms of seeking treatment, I recommend evaluating the 3
doctors mentioned above and seeing whose approach seems most thorough and
promising. The unfortunate reality is that these treatments are expensive and
will not be covered by insurance, since the current majority opinion of the
medical community does not consider autism to be a treatable condition, at
least not medically. After my son’s diagnosis, Allah provided me with a job with
a 30% increase in salary and I was able to provide the care that I felt he
needed, walhamdulillah. I wish you and all the other parents of autistic kids
the best, and Allah knows best.
Timor
May 2, 2012 at 9:42 PM
Salam Alaikum brother Abu Omar,
Looks like your son and my son are almost at same age, and we have been taking the same approach in seeking treatments. I like to get in contact with you and share some notes and like to learn more about the researches you have done. my email is timor@live.com.
Pingback: What we get, may not always be what we want « This is me, now.
Hamza 21
May 2, 2012 at 10:19 PM
From your conversations with your son Khalid I believe he will do well in the future. Have you seen this video.
http://www.youtube.com/watch?v=OV_CcmLlaw4
There’s hope for the future.
Ummi
May 5, 2012 at 2:35 AM
I am the mother of an almost 5 year old who was diagnosed as autistic when he was just under 2 years of age.
Alhamdulillah there are many people who have the means, resources and
insurance coverage to try anything and everything under the sun for
their child.
Sadly, there are so many more families who cannot try every approach possible, and we are one.
My son is the youngest of 5 siblings, and I knew by 18 months that
something was not quite right. His skills disappeared, he
did not respond to his name, never made eye contact, the speech he once
had became babble chatter, hands flapping, hitting his head, fixation
with spinning. He was diagnosed as being severely autistic. Both my
husband and I read,and read,and read. The more we read, the more we did
not know what approach to take.
This forum affords me anonymity,and I will say that nothing hurts a
parent more than the inability to help their own child or provide the
necessary resources for them. Being in contact with various forums,
support groups , other families with autistic children was very
comforting.
We applied for every government program available and received some.
Other well wishers told us of other approaches, either it was something
we simply could not afford or it was not available through other means.
I believed then and I do still believe that one is tested through their
children. I love all of my children, but this youngest one has stolen my
heart. He is the love of my life, the light in my life. He has the
shiniest, naughtiest, twinkling brown eyes, and an infectious laugh
that will make you laugh and cry with joy. My feelings were quite
different 3 years ago. Tantrum, meltdown after meltdown, screeching and
screeching wore my family out. The other children did not want to be
around him, nobody wanted ‘us’ around them. My husband and I fought, my
husband started to stay away from home. But that was 3 years ago.
Just prior to his 4th birthday, my son become somewhat verbal.
Alhmadulillah. We have a long, bumpy way to go..but I have faith that
my son is improving day by day. We have strong eye contact, he responds
to his name when he feels like it. He became toilet trained by his 3rd
birthday. No more spinning around, staring at spinning objects for hours
on end.
One of his first words was “Allah”. Now he says the dua for going to
sleep at night and will say it at least 5 times. His version of the dua
is “Allah umma, bissika, amootu was asiya” ,and I cannot make him say it
better than that. Allah SWT is truly the Most Merciful and Forgiving.
The past month has seen an enormous change in his diet. Whereas his
diet consisted of white/beige bland foods, now he is trying various
foods, all home cooked meals. I feel he is making up for what he has
missed. Today he ate ground chicken and rice. he loves to drink milk,
has developed a taste for sweet corn and maple and brown sugar oatmeal. I
truly did not believe I would see this happen.He is hyper sensitive to
taste, textures, light, stimuli. He despises the spoon to touch his
lips. Brushing teeth is a nightmare, taking a bath is a ritual that
takes place every 10 days, otherwise it is a sponge bath.
We have many ‘bad’ days, but the ‘good’ days make up for it. His
doctors, therapists, and teachers are very pleased with his progress and
we are cautiously optimistic as to what the future holds.
I really do wonder if he was misdiagnosed in the first place. I am
scared and hopeful for the future..and in the end Allah knows best. My
duaas are with you all, for each family that has a special child as mine. and we are one.
My son is the youngest of 5 siblings, and I knew by 18 months that
something was not quite right. The skills he once had disappeared, he
did not respond to his name, never made eye contact, the speech he once
had became babble chatter, hands flapping, hitting his head, fixation
with spinning. He was diagnosed as being severely autistic. Both my
husband and I read,and read,and read. The more we read, the more we did
not know what approach to take.
This forum affords me anonymity,and I will say that nothing hurts a
parent more than the inability to help their own child or provide the
necessary resources for them. Being in contact with various forums,
support groups , other families with autistic children was very
comforting.
We applied for every government program available and received some.
Other well wishers told us of other approaches, either it was something
we simply could not afford or it was not available through other means.
I believed then and I do still believe that one is tested through their
children. I love all of my children, but this youngest one has stolen my
heart. He is the love of my life, the light in my life. He has the
shiniest, naughtiest, twinkling brown eyes, and an infectious laugh
that will make you laugh and cry with joy. My feelings were quite
different 3 years ago. Tantrum, meltdown after meltdown, screeching and
screeching wore my family out. The other children did not want to be
around him, nobody wanted ‘us’ around them. My husband and I fought, my
husband started to stay away from home. But that was 3 years ago.
Just prior to his 4th birthday, my son become somewhat verbal.
Alhmadulillah. We have a long, bumpy way to go..but I have faith that
my son is improving day by day. We have strong eye contact, he responds
to his name when he feels like it. He became toilet trained by his 3rd
birthday. No more spinning around, staring at spinning objects for hours
on end.
One of his first words was “Allah”. Now he says the dua for going to
sleep at night and will say it at least 5 times. His version of the dua
is “Allah umma, bissika, amootu was asiya” ,and I cannot make him say it
better than that. Allah SWT is truly the Most Merciful and Forgiving.
The past month has seen an enormous change in his diet. Whereas his
diet consisted of white/beige bland foods, now he is trying various
foods, all home cooked meals. I feel he is making up for what he has
missed. Today he ate ground chicken and rice. he loves to drink milk,
has developed a taste for sweet corn and maple and brown sugar oatmeal. I
truly did not believe I would see this happen.He is hyper sensitive to
taste, textures, light, stimuli. He despises the spoon to touch his
lips. Brushing teeth is a nightmare, taking a bath is a ritual that
takes place every 10 days, otherwise it is a sponge bath.
We have many ‘bad’ days, but the ‘good’ days make up for it. His
doctors, therapists, and teachers are very pleased with his progress and
we are cautiously optimistic as to what the future holds.
I really do wonder if he was misdiagnosed in the first place. We did discuss this recently with his doctors etc, but they stand by their evaluations. I am
scared and hopeful for the future..and in the end Allah knows best. My
duaas are with you all, for each family that has a child as special as mine.
Gluten Derek
May 23, 2012 at 9:29 PM
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May 25, 2012 at 2:40 AM
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TSPMuslim
May 26, 2012 at 6:20 PM
As salaamu alaikum, Jazak Allahu khair for the reminder. It helped me to start “dealing”.
My thoughts and ideas and I mentioned your article ukhti.
Islam, Autism and Life: http://tspmuslim.com/islam-autism-life/
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fathima
June 12, 2014 at 10:10 PM
Salaams everybody,
Peace and blessings to you all. My son is 9 and even though he was diagnosed at 4 and later at 7, I see him as perfectly normal. He can communicate very clearly with me and his greatest wish at the moment is to have friends. For a child who started talking late, the many hours of therapy and myself as a strong advocate for him as helped in his progress. However, as Zeba mentioned, the door is literally shut in their faces from Kindergarten and onwards. The regular schools won’t provide the support he needs to succeed, the private schools will not accept him as he has fallen behind in his work and the special schools are financially crippling and will keep you hanging on for years with no guaranteed results. He suffers from gut inflammation and we are still trying to heal him. The local mosque will not accept him in the Sunday school program because he needs extra attention. Although he was happy to be with the rest of the kids in the Sunday school program, he was lost in the class. It was shameful on their part, because had they made him feel welcome and understood his needs better, he could have continued going as he wished and possibly absorbed some lessons. The society we live in needs to be aware that these children can improve with therapy, inclusion and the belief that they can do anything… I believe there is a cure for anything…. whether the Creator will make it happen for our children is his decision. It is up to us, as parents, since we are their only real advocates, to keep doing whatever we can to make it better for them.
Kevin Dunphy
July 27, 2016 at 5:59 PM
I have four children on the spectrum and four who are not. There was a time that for a year or so, I couldn’t even go to the Khutba on Friday because my kids were too disruptive. I was a single father then and couldn’t afford day care. No one at the mesjid wanted to take them even just long enough for me to go to the Khutba. My non-Muslim family didn’t help either. They didn’t think that going to the mesjid was important. Very discouraging.