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Early Autism Recognition = Hope

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This poster was featured only on the designer’s portfolio page, and never made it to mainstream advertising.  It was probably considered too raw.

Before we knew my son had autism, I thought no one in the world did what he did or acted the way he acted. He never spoke, he looked not at us, but through us, and when he was excited, he stood and flapped his hands.  We used to wryly joke that if he had wings he would have flown away already.  We knew something was wrong, but every doctor we took him to told us to wait, he would grow out of it.  Some children do, but here’s the problem – some children don’t, and the later the diagnosis, the smaller the chance they have at recovery.

Having said that though, there’s more to diagnosis than simply taking your child to a pediatrician.  When we took our son to his pediatrician and asked outright – Do you think Khalid has autism? The pediatrician asked, “Does he mind having his ears touched?”  We said no.  “Well then, he’s not autistic!”

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This was the pediatrician’s assessment of a two year old who was completely non-verbal, cried when anyone laughed in his presence, woke up screaming every two hours through the night and banged his head against windows and walls when he was upset.  I met a mother just this week who told me a similar story.  Her pediatrician said that because her son liked to be hugged, he must not have autism.

What both of our pediatricians should have done was use the MCHAT, or Modified Checklist for Autism in Toddlers, which is a tool for screening children and determining which ones should be directed towards further assessment.  Had our pediatrician done that, he would have seen my son score worryingly on 18 of the 22 questions, and we may have been pointed towards a diagnosis earlier.

Early recognition of autism can give a child a fighting chance against silence and a lifetime of dependence, and behaviour-based therapies, like ABA – Applied Behavioural Analysis – work best when therapists can take advantage of early childhood learning.  A child’s brain is almost entirely developed by the age of nine, and the most growth and opportunity for learning and retention happen within the early years.  The earlier a child is diagnosed, the sooner they can begin receiving the 20+ hours of treatment a week that they require to help bridge the gap between themselves and their ‘normal,’ or neurotypical peers.

The actual diagnosis of autism is made by a clinical psychologist using a array of standardized tests, like the CARSGARS, and Vineland Adaptive Behavior Scale.  Psychologists may further conduct to the ABLLS test to measure academic capabilities in a child where this test is relevant, but this is not a diagnostic tool so much as it is an indicator of a child’s academic abilities.

Even if you don’t have children, or definitely don’t have any children with autism, being able to spot it may mean crucial awareness for someone you meet. We were finally pushed to seek out a specialist when two sisters – mine and my husband’s – told us independently that they thought our son had most of the features of autism.  My husband’s sister was a teacher working with special needs children, and my sister was a science journalist who had just written an article about autism.  If they hadn’t been familiar with the signs, they would never have been able to voice their informed concerns about our son’s well-being.  If they hadn’t been educated, then they would have been just two more people in the group of well-intentioned but poorly informed people who told us, “Don’t worry, he’ll grow out of it…” or “Look at him, he looks normal.”

Children with autism, from the outside, do look completely normal.  Unlike children with Down’s Syndrome or Cerebral Palsy, they aren’t set apart by physical characteristics.  Additionally, no two children with autism will display the same set of characteristics, which further confuses an outsider.  I know of one little girl who can write but not read, and a little boy who can sing but not speak, and my own son who spins in circles until he falls down and seeks out skin-to-skin contact, even up the shirts of strangers in the mall.  But there is a thread that binds these children under the umbrella of autism, and it has three strands.  Children with autism generally have problems in three crucial areas of development —

  • Social interaction
  • Language
  • Behavior

The follow set of symptoms have been reprinted from the Mayo Clinic section on Autism, and the full version may be accessed here.

Symptoms

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
When to see a doctor
Babies develop at their own pace, and many don’t follow exact timelines found in some parenting books. But children with autism usually show some signs of delayed development by 18 months. If you suspect that your child may have autism, discuss your concerns with your doctor. The earlier treatment begins, the more effective it will be.
Your doctor may recommend further developmental tests if your child:
  • Doesn’t babble or coo by 12 months
  • Doesn’t gesture — such as point or wave — by 12 months
  • Doesn’t say single words by 16 months
  • Doesn’t say two-word phrases by 24 months
  • Loses previously acquired language or social skills at any age

The more informed we are, as Muslims, as concerned siblings, neighbors, relatives and professionals, the more likely we are to guide parents to proper diagnosis and the help their children need. If you have read this article through to the end, and in the future, meet a mother who says she’s worried about her child, resist the temptation to give her reassurance. Instead, tell her about an article you read once, and dig it up again, or just google it, and send her the list of symptoms. Then, let her decide whether she needs to be worried or not. Uninformed reassurances only delay proper diagnosis, and delay acceptance of the child’s condition and subsequent needs. And you can assure the mother that Allah will never test her or her child with something beyond their abilities, but unless you’re a clinical psychologist with a pack of assessments in your pocket, you can’t reassure her that her child is fine.

Many parents, upon discovering the significance of their child’s diagnosis, will pass through phases similar to grieving – denial, bargaining, anger, and eventually acceptance. And in case you wonder how on earth bargaining happens, sometimes parents shop around for an expert who will tell them what they want to hear- that although their child lives in a bubble and does not speak or interact with the world around him, that he’s fine. Or that he just needs a little speech therapy. Or maybe some sort of herbal tonic. Or that his inability to comprehend simple instructions or complete a basic task is because he is spoiled by his mother or nanny, and a little tough love will set him straight. You’d be surprised how popular the ‘blame the caregiver’ approach can be, especially to relatives who, as I have been told by one mother, “…just don’t believe in your autism thing.”

Parents spend so many years being told ‘He’ll grow out of it, he’s fine!” that by the time they finally come to acceptance, they are escorting a non-verbal twelve year old in diapers to a center that tells him they’re too late for the early, intensive intervention that could have helped their child. And that, as a mother, is heart breaking.

There are cases when a child’s autism is so severe that their potential is accordingly limited. And then there are cases where their autism was moderate, or even mild, but their potential was lost due to years of denial. We can’t do anything about the first type of cases, but there’s a whole lot that can be done for the second.

Early recognition and treatment is a child’s strongest chance for recovery, and although it cannot yet be cured, behavioral and educational therapies can help offset learning delays and replace problem behaviors so effectively, and so smoothly, that a child looses their diagnosis because the symptoms of autism are no longer there. That is the goal, and you can help. As Muslims, we believe that God did not create any disease without its cure, and until it is discovered, we can pray for the parents and children, and keep our eyes open for opportunities to increase awareness.

May Allah increase us all in patience, and make us thankful for the blessings we take for granted, and increase our community in knowledge in all aspects of life, especially those that help others. Ameen.

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Zeba Khan is the Director of Development for MuslimMatters.org and the producer of the newly launched Muslimmatters Podcast, 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.

21 Comments

21 Comments

  1. AbuKBW

    November 24, 2010 at 1:13 AM

    Jazak Allah Khair for a great piece Abez.

    May Allah (SWT) protect our children and give them a character that He loves.

    Ameen.

  2. Linda (part II)

    November 24, 2010 at 2:09 AM

    May Allah increase us all in patience, and make us thankful for the blessings we take for granted, and increase our community in knowledge in all aspects of life, especially those that help others. Ameen.

    Ameen and thank you very much for this article.

  3. Anne

    November 24, 2010 at 8:19 AM

    Salaam,

    Good article but the accompanying photo is offensive. People with disabilities, including those on the Autism Spectrum, are NOT infants in adults bodies. The picture suggests just that. People with disbilities can lead full meaningful lives and do all the same things “normals” ( which is what we called “typical” folks in my job club for disabled teens).

    Please put up a different photo. I appreciate the Autism folks themselves created it, but it is no better than Jerry Lewis saying people with MD would be better off dead to raise money to help them (and yes he said it).

    http://thekidsareallright.org/ About one of Jerry’s orphans.

    If we are to enlighten our co-religionists to be more aware of those with disabilities, lets not perpetuaute that they all somehow incomplete. Trust me, I know many “normals” who are infinitely less functional than disabled people.

    Thank you. Anne

    • Abez

      November 24, 2010 at 11:55 PM

      People with disabilities, including those on the Autism Spectrum, are NOT infants in adults bodies

      I completely agree, and this poster was not mean to be a representation of the entire (or even part of) the autism spectrum. At first glance it’s a shocking wake up call, and at second glance, it’s just a visually neater portrayal of things I’ve already seen- adolescents in diapers, six year olds with pacifiers, children in mental boxes so locked that the assessors have no way of putting an age to their mental abilities. They are assessed not as low or moderately functioning, but non-functioning. And that’s not fair to the children. They deserve to be taken care of, they deserve the help they need, and if that means we get a little uncomfortable with a peek into a future that looks less than ideal, then so be it.

      Individuals with autism, from the lowest to the highest functioning, are beautiful humans with personalities and abilities no less important nor unique than those of us ‘normal’ people. They don’t need reprogramming or eugenic elimination from the gene pool (prenatal autism test = scary) they need early intervention to help them compensate for the social, verbal, and behavioral skills that often fall behind their analytical, visual, and spatial skills.

      My son, in all his quirkiness- from the flapping to the spinning to the writing words in the air with his fingers instead of telling us what he wants- is more than complete, he’s an enrichment to our lives and the betterment of us as parents and as people of faith.

      • sister

        July 10, 2011 at 8:04 PM

        i will continue to keep you and your familly in my prayers sister Abez
        May Allah reward you abundantly in both worlds :)

  4. Umm Abdullaah

    November 24, 2010 at 11:56 AM

    Assalaamu alaykum wa rahmatullaah

    Though Autism is a sickness, but not every child that have these symptoms can be autistic child. one of my friend has a son, who had the same symptoms
    # late speech
    # hand-flapping
    # disturbed at the change in routines or rituals
    # Moving constantly
    # was fascinated by spinning wheels of a toy car/ fan etc

    # crying to see new faces
    # chewing problem & some others

    The outcome was that the doctors said he is Autistic child. his parents started his speech therapy, other appointments with the doctors.

    But since her family is afflicted with Sehr /Magic & they are continuously doing the ruqyah & treatment for it, one of her sister asked the mother to take him to the raaqi too & continue both the treatments, Medical & Islamic Ruqyah.

    Alhamdulillaah, with the blessings of Allaah, in few months that child became completely normal. The speech therapy was stopped as the therapist had some other things & his mother was very worried about her child but alhamdulillaah, now she also admits & believes that the child had an evil eye/ayn as was told by the raaqi.

    I do not say don’t go for medical treatment. but I DO say to do Ruqyah & seek the Islaamic treatment..

    Indeed, The Qur’aan is Shifaa

    (remember the story of scorpion bite & the sahabee reading soorah Al-fatihah on him).

    may Allaah protect our children. ameen

    Umm Abdullaah

    p.s. Please do your morning & evening Adhkaar regularly & read & blow on your children too. these adhkaar are protection against shayateen & jinn, specially the 100 times (( “Laa ilaaha illlallaahu wahdahu laa shareeka lahu, lahu-lmulk wa lahul-Hamd, wa howa alaa kulli shay’in Qadeer.”))

    • Emma Apple

      November 24, 2010 at 6:24 PM

      Asalamualekom sis,
      I just wanted to clarify that Autism isn’t a sickness but a neurological disorder. There is no cure for Autism and you can’t recover from it (although some people can improve to the point of their symptoms being sub-clinical, they are not ‘cured’) there are only therapies and coping tools which work to varying degrees for different people.

      • Sam

        November 26, 2010 at 7:04 AM

        you happen to be wrong. Becuase I have seen with my own eyes fully revovered children

        • Emma Apple

          November 29, 2010 at 1:30 AM

          Like I said, people can become sub-clinical, but they don’t recover. I’m well aware though that this is a controversial topic and many people believe that you can recover from Autism. I happen to believe otherwise and hope that as I respect your view of it, you too might respect mine.

    • Abez

      November 25, 2010 at 12:09 AM

      Every Muslim mother and father, I have no doubt, has made and will continue to make desperate dua to Allah for the healing of their child. And many people seek shifa through ruqayya, and that’s Islamically valid as well. I agree.

      Where I completely and strongly disagree is with not seeking other treatment options. That is a violation of the child’s rights, and does not make people stronger Muslims. Seeking treatment, as well as help from Allah, are both the responsibility of a Muslim. Because to ignore the blessings of Allah that are available through what knowledge He has given us is a rejection of His Favors.

      I would greatly recommend the book ‘The Jinn and Human Sickness- Remedies in the Light of the Qur’aan and Sunnah’ by Dr. Abu’l-Mundhir Khaleel ibn Ibraaheem Ameen. His book not only outlines which treatments and methods are permissable, but which are deviations, and how to guard against those who use ruqaiyya as a prolonged money-making scheme.

    • Iman

      July 25, 2014 at 8:27 PM

      Assalamualaikum Umm Andullah
      Could you please tell me what duas were made, what rukhaya? My son has symptoms of autism, that is, speech delay and being restless. But doctors have varied opinions, most of them refuse to fix on autism diagnosis, just recently a family friend introduced us to a Unani doctor who took a look at him and said that it is not autism, he suffers from evil eyes and sehr. Please do tell me what you know of how rukhaya can be done, i am so desperate to do it for him!

  5. Holly Garza

    November 24, 2010 at 3:22 PM

    thank you for the article-re posting on my facebook group

  6. Sarah

    November 24, 2010 at 4:44 PM

    A heartbreaking yet needed article for parents today.

    Heartbreaking because my own sister had autism and it was not taken seriously until she passed 12yrs. Alhamdulilah, she can communicate to some extent but I am sure that treatment would have benefited her.

    The part where we went wrong was how we allowed her to stay in a diability class within a normal school. The problem with that was that she began to copy the behaivor of those children because she thought that’s normal and it was very hard for us to change that.

    People need to know that Autism children are special, they look normal and they are capable of so many things. In fact, my sister has beautiful handwriting, knows how to paint, how to sew, how to cook certain things (last time she cooked biscuits that she learned how to make at school and we didn’t know what she was on about because she didn’t know how to tell us, so she just pushed, gestured, spoke a few words to get her ingredients and she made the rest herself – they tasted very good too), she memorises things really well, she is really stylish and knows the way with outfits/makeup, better then a lot of people, mashaAllah. The only thing she can’t do is speak and hold a conversation, that’s where all the tantrums come in because they want to say something but just don’t know how.

    Therefore they must, i repeat, MUST be placed ispecialised classes for autism children because the teachers are trained and know how to teach them (unlike a normal teacher for a disability class) and how to communicate with them.

    I pray that every parent is able to spot autism before its too late.

    • Hidaya

      December 4, 2010 at 9:53 AM

      SubhanAllah she sounds so special m’A – Thanks for sharing with us!

    • Jefri Abu Bakar

      March 14, 2011 at 12:49 PM

      Agreed. My cousin is also am autism child. he is 10 yrs old now.

      I did not stay with his family previously, so am not informed of the condition.
      I only ever heard that he has late speech and my grandmother told my aunt to be patient.
      But it seems to be too late and when she went for checks, then she realized of his condition
      when he is 5/6 years old. He was then enrolled in a Special School. That is the special school that have 1 teacher attending to 2-3 autism kids unlike 40 students in a normal classroom. Special full attention will be given to them to develop skills, even speech which he slowly did speak out.

      When i return to stay with them i see wonders in this boy despite his autism.

      1) Knowing that he can speak but lazy to speak up, i will make him sit in front of me to teach him a few phrases like saying his name, asking him to point to whom i called the name, and some basic speech and language understanding. At times he does feel agitated and throw tantrums but i stood firm and i told him that i would not release him until he follows what i had taught him. Then when he had say, i would let him go. Until now when i come home once a while he will shake my hand and kiss me, all this due to practical that we must instill in him with patience and love and extra love for his special conditions yet being firm to decisions between what we need and what he wants. Never spoilt them just because they are special. If they wet their bed, teach them to clear it and they will stop wetting their bed and search for the toilet. Keep instilling disciple and you’ll be surprise that they are more disciplined than your other normal kids. My aunt was surprise what he does and the big gap difference with his normal brother and sisters who have been pampered too much and spoilt.

      2) I have to admit that he is a very fast learner than normal people like us.
      I ever set up my PC from scratch fixing the motherboard, memory, hard drive, cables
      etc. and he was watching me by the side.
      As computer is his favourite to play games on it, i decided to unplug the hard drive cable and power cables. While my auntie trying desperately to get it up and running and give up, he laugh at my aunt and does the unthinkable. He checked every parts of it were in place, then plug in the hard drive cables and power cables and start up the system, to my aunt’s surprise.
      When i reached home, my aunt told me and i said i knew that already. So i dismantled everything and asked him to reassembled again and he can follow the same way as i had done from fixing to troubleshooting the day before.

      3) He while watching his brother plays online games with shortcuts keys, he too can do it and not surprisingly faster than us. He knew how to download movies from youtube, convert it and put into the PSP to watch. All are done not by us teaching but by him observing us.
      Nowadays whatever i do that i do not want him to follow like passwords, i will ask him to close his eyes or get out of the room before inserting the passwords.
      Their memory are like 4 Gigabyte (GB) while our still at a 512 Megabyte (MB).

      4) They are good immitators. They have great will to learn by watching and practical not by listening or speech. He ever drove my uncle’s car towards a slope. Lucky there is a rock. Allah really protects him from harm. He wanted to immitate my uncle driving, so when there are no one around and the key is there, he took that great opportunity. I knew this will happen as i ever caught him 2-3 times taking the keys away and find the car, even had started the engine. Luckily Allah gave me a great instinct to be this special boy’s caretaker and sensing he is not within my radius, i went after him before he got to step on the accelerator pedal, worst still our car is automatic.

      5) And i have to react by installing a burglar alarm with passwords when he went off from home 3/4 times, and have to make a police reports. Again everytime he was going for trouble, ALLAH is always by his side to protect him from further harm. So after that, the moment he opens the gate, everyone will react to stop him before he runs off (he also runs twice faster than us, i am really exhausted running after him) further. And when he hears the 21decible alarm, he will stay indoors as it is deafening (irritating) to him but not to us.

      My advice is to spot the problem from the core if you are not working and can monitor your children 24 hrs. Follow up on a child’s development. Check and ensure what they are getting into in an early stage.
      Do not panic when there are bad news. Keep patience and think of a solutions. Pray to the One who created us “ALLAH”. HE knows best of all HIS creatures. Seek HIS protection from harm and ask for HIS guidance.

      Whatever you do, put the child’s safety first and always think of the unthinkable ways. They are always smarter and above than us. So learn to be smarter or at least as smart as them to expect troubles that could come from their hyper activeness.

      Hope the above are a very good examples that i can share and benefits everyone in here..

  7. Emma Apple

    November 24, 2010 at 6:25 PM

    MashaAllah as always a wonderful article sis Zeba! Jazaki Allahu khairun!

  8. ummousama

    November 25, 2010 at 8:50 AM

    Assalamu alaikum,

    A sister I personally know has had some success with hijamah (cupping). Her son also blossomed when he went to Arabic school on the week-end but had limited improvement in an English school even though he had a one-to-one aide.

    My son is not autistic but has got some other disabilities. Remember the whole body is a machine except for two organs: the heart and the brain.

    The heart is a machine in its blood functioning. However, the heart is where people feel, it is where the guidance is seated. Didn’t Rasulullah (salla Allahu alaihi wa sallam) make du’a to the “muqallib al-qulub”? Hearts can be dead, alive or in between. The heart is the seat of emotions and this is why I would recommend no Muslim to have a heart transplant.

    As for the brain, this is where thoughts are seated, where speech is seated, where reasoning takes place. Although two hearts can feel the same emotions, no two brain think the same way. For this reason, I believe that the brain will NEVER be completely understood by the human being. For this reason too, every treatment of neurological disorder has to be individualised. For that, it requires a wonderful and caring doctor and at least one of the parent who invest himself (or herself) in researching the condition of the child to be at par with the doctor. What works for one doesn’t work for another. Try what other suggests but don’t make it a rule.

    May Allah cure our children.

  9. SA

    November 25, 2010 at 9:47 PM

    Jazakallah Khairan for the informative article. I just had a quick question about a line you wrote:

    “As Muslims, we believe that God did not create any disease without its cure”

    Is there a Hadith for this? I wanted to read up more about it.

    • Abez

      December 8, 2010 at 11:13 AM

      Sorry it took me so long to track this down!

      Narrated Abu Huraira: The Prophet said, “There is no disease that Allah has created, except that He also has created its treatment.” -Sahih Bukhari, Book 71. Medicine

  10. Pingback: Autism gaining recognition in the Muslim Community « Blue Hijab Day

  11. Jusna miah

    August 16, 2014 at 8:10 PM

    Can someone please tell me why doctors can’t find the cause of autsim could this be evil eye

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