Miracles Happen

It was August 19th, 2004. I was at a rarely-in-town Floortime workshop with a renown and lively speech therapist from Toronto. Lunch break arrives, and my new cell phone proves to be the most wise parental purchase I ever made. Just on the dot at 12 noon I get a strange message from the summer camp – “Tamya fell of the carousel and bent her knee (what the F??? one may ask, and the answer will come only a few hours later), but she is ok now, in Burnaby General Hospital. I call my partner right away, and ask him if I he can go to the hospital to see what’s going on. If I was at a business meeting I would think twice, and go to the hospital right away. But I was there for her, so I felt comfortable enough to share the parental responsibilities with him and not panic. Three hours later, the call comes: Tamya got X Rayed, and the light-board was in front of her bed. David didn’t need to hear what the doctor had to say, he passed her straight to me, and we both heard for the firs time that Tamya’s femur is broken, just above the knee. But the knee wasn’t broken, so I sighed with relief, and hailed a taxi right away to the other town. When I arrived, I saw a girl that I never seen before. Completely drugged out with morphine, yet still in tremendous pain. I was never close to anyone who broke a limb, so there was nothing in the world that could have prepared me to what was about to happen in the next 11 hours, and the six months that followed.

We had to transfer her in an ambulance to Children’s Hospital. They had to tie her up to stretcher, and her eyes popped out of her head (literally) from the pain. The ride was a nightmare, but it ended eventually. The ordeals of the emergency room are something I will spare you, but I have never seen so much pain in my life. Despite the morphine shots, the girl was in more pain than I ever knew a human can experience. I had to see her eyeballs pop even more when the leg was stretched. Than it was pee time…with the help of a painful catheter. This went on and on, until, after 11 hours, her muscels finally relaxed enough to go to the surgery room and spend three hours there to get fixed. What can I tell you, giving birth is painful. But hurts much more to see your child suffering pain that is far more intense than labour. In that tremendous pain though, for the first time, Tamya reached out for us to help her and support her in coping with the pain. It’s not like the bonding between us wasn’t strong enough before. But now was the first time she needed us to support her when suffering, instead of withdrawing. This was a pain that sneaking to the bathroom cupboard and covering up with a bandaid was not only useless but also impossible: she was not able to leave the bed for the next six weeks.

The next three weeks were immersed not only with pain, but also with anxiety and helplessness that Tamya has never experienced before. I won’t bore you any further with all the turmoil of recovering from a broken femur – the daily painkiller doses, the challenges of bathing, the resistance to physiotherapy, the intense fear of walking again… After six weeks in a brace and after about three month learning to walk again (for a long time with a distinct limp of course), Tamya has emerged a changed person: she was now focused, was able to sit down for prolonged time (I guess after six weeks in a wheelchair an hour of a boring school assembly is like a slice of pie!), and couldn’t shut up for a moment. Her speech therapy sessions were incredibly effective. I now heard with my own ears what Vinni (her Speech Therapy in the past 4 years) was confident is going to happen. The most improbable thing of all, which most parents and children take for granted – the beginning of speech. New words have been coming out of her mouth every day. Sentences, even. I finally reached the point that most parents reach when their child turns three: I wanted her to sometimes just be quiet like she used to be; you see, I really got used to the silence and to the non-verbal communication with her…

In a sense, this was Tamya's re-birth. It was even nore painful than birth and she emerged out of this extreme experience a completely different person. At the age of 8, the unbelieveable happened: Tamya started talking.

In the photo you see Tamya two years ago in early Fall 2004. She is sitting on a wheelchair posing for a newsletter of The Corporation, and she has a brace on her entire left leg.

Happy Birthday to Tamya!

This year is the first year that Tamya can tell us how old she is: Ten!

She had the perfect birthday:

Lots of friends visiting

Birthday Cake (we made blackforest cake together!)

Pumpkin Carvin'

Lots of cool presents (mostly crafsty stuff, including smelly markers, scrapbooking stuff such as stickers and tracing templates, her first journal - with a lock! - and her very first set of acrylics and canvas frames!).

We now just got back from getting her favourite Gelato - four scoops as always: Mango, Black Sesame Seed, Spiced Pumpkin and Vanilla. Surprisingly - no coconut this time!

Treatments for Autism

Autism cannot be cured. Thankfully, it can be treated. The earlier the diagnosis and the earlier an intervention program is set in place to support the child and the family – the better the prognosis.

The extreme desperation of parents and educators, combined with an embarrassing shortage of autism treatment research has lead, unfortunately, to the existence of plenty of quacks offering miraculous “groundbreaking” treatments for children with autism. Some of these methods may seem to work, some may prove to be quackery immediately.
So it’s important that if you are a parent to a child with autism, you choose the program that is right for your child, your family and your philosophy. To read more about autism treatment, visit this site.

Different therapy techniques and approaches target different aspects and “symptoms” of autism. The causes for autism in each individual are usually unknown, and therefore it is impossible to choose one single therapy method for a child. I strongly recommend using a combination of some of the following methods, and I think the emphasis should be on the educational approaches, with the usage of other methods to complement it. When it comes down to the daily life, what we do with our children is educating them 24/7. At home, at school, in the fields or on the street. If you have an educational therapy plan you will be able to heal your child at any given point in the day! This will make both of you feel much better.

Educational Approaches:

DIR- FLOORTIME

The philosophy of Floortime was developed by Dr. Stanley Greenspan and is designed for all children with any kind of disability or developmental delay. This is a developmental and humanistic oriented approach, that is geared towards developing the individual, rather than his or her skills.

The Floortime approach is meant to help the child fill in the missing gaps in their development and climb to the next step on the developmental ladder.

Floortime therapy is a very flexible and creative approach. It encourages all the individuals involved in the child life to spend (combined) 5 sessions a day of 10-30 minutes each of high-intensity emotional connectedness with the child, by following the child’s lead. The idea is that when you follow a child’s lead, you follow them to their world and in their true interest (this can be anything from spinning around the room, or even running away from the therapist/parent/caregiver). This is how the therapist (which in Floortime is really all the people involved in the child’s life: parents, siblings, teachers, etc.) unlocks the door to the child’s inner world, and creates a personal connection. Sounds too spiritual or flaky? Try it for yourself. As a mother to a toddler who had no interest in games, stories or toys whatsoever, this was the only way I could actually tap into her world and engage in a conversation with her (perhaps non-verbal, but there was an exchange of information involved!). It was fun. We used anything that interested her, from tickles to puppets, to make each circle of communication as long and pleasurable as possible.

One of the most important things that are usually lacking the most in individuals with autism is the ability to “share the moment”. In Floortime, the emotional energy created by sharing the moment with the child is used to learn new things and create more and more circles of communications, which are the missing milestone without which no communication can occur.

Also, when parents engaged in a Floortime session, both the parents and the child can release emotional tension, as this is a play-based, high-energy activity. It helps with the bonding and helps the caregivers as well as the child an opportunity to renew and rejuvenate themselves emotionally. I am terribly biased towards Floortime as a whole, and therefore I have installed a small article about it earlier.

Links related to Floortime:

Alternatives to Behaviourism

Floortime Overview and Strategies (a website of a parent to a child with Asperger’s Syndrom)

SOCIAL STORIES
Social stories are a method used mostly for autism, and it is meant to put order and logic into social interaction (which are usually a very chaotic phenomenon if you think about it). The social story is often accompanied by images – either photographs, drawings, or symbols (often PECs symbols).
Social stories simplify social situations, and tell the way in which the person should be acting in all the different scenarios. It can be anything from a bedtime routine, to how to play games, how to behave in the classroom or on the playground, to more sophisticated scenarios of threatening emotions and language challenges.
Here are a few examples:

Circle time:
It is circle time.
When it is time for circle, I go sit in a blue chair.
I sit with my feet on the floor and my hands to myself.
It doesn't matter who I sit next to. I will shake their hand and say good morning.
I help Mrs. G. at circle by listening...
Waiting my turn...
And sitting like a big kid in my chair.
I don't get angry when I don't get a turn because I will get a turn another day.
When circle is over, I wait until Mrs. G. tells me where to go.
I did great at circle today!

Dealing with difficult, unpleasant emotions:
Sometimes I feel angry.
All people feel angry at one time or another.
When I get angry I will find my teacher, Mommy, Daddy or another adult.
When I find them I will try to use words to tell them that I am angry.
I can say "I'm angry!" or "That makes me mad!"
It is okay to use words when I feel angry.
They will talk to me about what happened and about how I feel.
This might help me to feel better.
Wherever I am I can try to find someone to talk to about how I feel.

This is a social story that can help an autistic person understand how to react to figures of speech. Most individuals with autism find figures of speech, puns and jokes to be very puzzling and have hard time understanding them Social stories can help.
Often, people say things that mean something different that the words might normally mean.
Sometimes, people say, "Save your breath."
They usually say this to someone who is arguing a point.
"Save your breath" means that you can stop arguing, because your arguments are not going to change the other person's mind.
If any of you have read the book “The Curious Incident of the Dog in the Night-Time”, you may have noticed that many parts of the book are written in this style of social stories. Social stories help reduce the stress that rises from very complex social interactions that are often overwhelming to a person with autism.

Related links:

Polyxo.com - an excellent resource for autism; all the social stories here are from there.
The Gray Centre for Social Learning and Understanding

PECS TRAINING
This is a tool that is used in many settings with children and adults that have speech and language challenges. A set of primitive images are used to represent each word. The pictures are either laminated or are used in a more high-tech manner (i.e. on a PalmPilot or a computer), and the person uses the pictures to communicate.
The pictures are often used to illustrate the child’s daily schedule, and the child will communicate their wants and needs by bringing a picture and exchanging it for the object or activity they want. The pictures can also be placed next to each other to form sentences.

PECS training is not meant to replace language. It is meant to reinforce the learning of language by making the process of language and exchange of communication a more concrete and tangible process. In fact, PECs training have proven to be extremely helpful in promoting literacy - learning reading and writing; because each word is printed on the cards, and so the child is visually exposed to the written words.

BEHAVIOIURAL THERAPY: APPLIED BEHAVIOURAL ANALYSIS (ABA)
Applied Behaviour Analysis is a method that teaches new skills as well as correct inappropriate or unwanted behaviour. This is done by using reinforcements: the wanted or “correct” behaviour is rewarded (either by a simple treat in early phases, or by praise, etc.).

These are very expensive therapies when done “by the book”, as they usually require 40-50 hours a week of one-to-one work with the therapist, at least in the early stages of intervention. This method is often integrated into the classrooms to teach very specific skills and tasks, i.e.: number recognition, learning safety rules, etc.

This method is the one that has been tested and researched more than any other approach, because it is so empirical, measurable. However, this does not mean that it is the only one that works. Lack of research funding should not be the indicator for which methods work or don’t work.
ABA Related links:

History of ABA

ABA Resources

Association of Behavioural Therapy International

PHYSICAL and MEDICAL INTERVENTION

BIOMEDICINE
Often, children with autism will present behaviorus that clearly indicate a chemical imbalance in their nervous system (for instance: interruption in the dopamine and serotonin system may cause Obsessive Compulsive Disorder, repetitive behaviours, ticks, etc.). If these behaviours are so extreme that they interfere negatively with the individual’s ability to live their lives, it may be a good idea to think of drug treatment. Don’t get too scared when you read the pamphlets for the drugs – they are often prescribed for anxiety, obsessive compulsive disorder and curiously enough schizophrenia.

Treatment with medication should be taken very seriously and really should be the last resort. Especially with young children. A psychiatrist that is too prescription happy may not be cautious enough. It’s of utmost importance that drugs be introduced gradually, and very very slowly, to reduce if not eliminate side effects altogether. To start gradually, child psychiatrist would prescribe minute doses in suspension or liquid, which allows for full control of the dosage and how slow it is introduced to the nervous system.

DIETARY INTERVENTIONS
Some individuals with autism have food allergies or sensitivities. Some parents and professionals noticed a significant improvement with their children when certain suspicious proteins where eliminated from their diet (primarily gluten, which is founding wheat, and kazaine, which is found in milk).

Other report improvement when certain supplements were given to the child. There is still not enough research done in this area to recommend dietary intervention to all children with autism though. Parents should be careful not to make dramatic changes in the child’t diet without consulting with their pediatritian and a nutritionist.

SENSORY INTEGRATION and “SENSORY DIET”
As I explained earlier, many of the phenomenon of autism are related to the inability of the nervous system to regulate itself. Make sure you hire an Occupational Therapist that specializes in autism and sensory integration. There are also some Sensory Integration clinics, that provide unusual sensations that are focused and targeted in order to help the child learn to organize their nervous system. Tactile activities such as foot-painting with slimy paint, bouncing on trampolines, wearing a cocoon bag from spandex which creates unusual pressure on the skin, the head and the joints, spinning and more. Some activities can be taken into the classroom or the gym, and be performed on a daily basis. Some children need sensory breaks. The WIllberer’s Protocol can be also performed almost anywhere and helps the child to reorganize their system and de-sensitize to the sensations that irritates them (this includes brushing the arms, legs and back with a surgical brush – through the clothes of course – followed by systematic joint compression).

COMPLEMENTARY THERAPIES: MUSIC THERAPY, ART THERAPY, ANIMAL THERAPY
These are wonderful opportunities for the child to be exposed to a different environment and experience that is nourishing for their soul and also enhances interaction with the therapist (or the animals), increases self esteem. Using non-verbal means for communication can be quite a relief for the child, and provides them with other tools for releasing tension. Singing can help develop the oral muscles and improve language skills, and listening to music helps develop listening and communicating skills. Swimming with dolphins and therapeutic horseback riding, for instance, help develop muscles, coordination and skills that wouldn’t get much attention otherwise.

A few tips and warning about recruiting people to work with your child:

Funding for autism therapy varies between countries, states, provinces, districts and cities. There is one thing in common everywhere though: there are always limited resources, both financial wise and manpower wise. If you are fortunate enough to live in a country that funds autism, and have a budget to work with – use it wisely. Here are a few tips:

1) Use whatever resources you have to the max. Get the professional (and expensive) therapists and consultants to be in constant communications with all the caregivers and educators involved in your child’s life. Get the daycare teachers to do as many one-on-one sessions as possible with your child (be it a Floortime session, an ABA session, a Sensory Integration session). These can be really short sessions, as long as they are frequent and meaningful.

2) Spend as little money as possible (if at all) on any consultant that actually behaves like a consultant. You need to get advice from people that know your child enough to truly recommend anything valuable. Consultants that see your child once a month or less are usually useless, unless they are amazing experts in their field. You would probably be able to tell pretty fast though…

3) Work as a team. Treat your therapy professionals as a team, and make them feel good about being in your team. Team meetings are excellent, as long as they don’t happen too frequently. Once a month is a good timing. More than two months apart might be too little especially in the first years. Bring some treats to the team meeting too ;)

4) Be the team leader. The parents know what’s best for their child, and they should be the ones who make the big decisions on what’s important to work on.

5) Make sure your therapy and educational team is always in fluent communication with you and preferably also with one another. The more you open the channels of communication, the better treatment your child will get. Joint sessions can be one of the most rewarding experiences for both the therapists and your child. They will create an environment of collaboration for your child and more importantly – provide continuity between one session to another. Practice makes perfect…

The people you choose to work with your child on a daily basis are going to have a significant impact on your child life. So be sure that you and your child like them and feel comfortable and safe around them, regardless of how impressive their education and qualifications are.

Quite recently, in British Columbia anyways, funding for autism has increased and became more reasonable. This is a blessing as well as a curse. There aren’t that many therapists experience or trained for treating autism, and unfortunately there are a few that are attracted to the job because of the new funding more than the work itself. Obviously, you want the person working with your child to be passionate about helping them

Some parents and therapists could be as passionate about their treatment philosophy as if it was a fundamentalist religion. I am none such fundamentalists, and I don’t believe that there is one single way to treat autism. which uses the most effective techniques for each specific child, in a particular situation and settings. I am going to do my best to steer away from such controversies, and I will simply outline a few of the most commonly practiced methods, which are used in schools and in most early intervention programs.

I personally believe that an eclectic approach that includes the methods that are most suitable for the child’s needs is ideal. I have my own personal bias towards Floortime, as it was a very rewarding experience to me and prove to work for my child; But I wouldn’t go as far as rejecting any other therapy just because this is what worked for my child. ABA is very effective for children with severe autism. It may help for teaching the child preliminary tools that are needed for the next step. I am a practical woman (and I bleive most parents have to learn to be practical after being in the business long enough), and I think you should pick and choose what’s best for your child, in each and every particular situation. For instance, a child may respond well to the playful and stimulating interactions of the Floortime approach, yet need a structured ABA session to learn her math and typing; She may also need a “sensory diet” to help her regulate her nervous system, social stories before difficult events (such as visiting the dentist or getting her hair done), and may even end up needing the help of drugs to regulate her obsessive-compulsive behaviorus once the hormones starts kicking in around puberty…

Floortime

Stanley Greenspan is a Clinical Professor of Psychiatry, Behavioural Science and Pediatrics and a practicing Child Psychiatrist. Greenspan developed DIR aka Floortime, a unique therapy approach for working with children with special needs, which has been significantly successful with children diagnosed with autism, a neurological disorder that deeply affects the child’s ability to communicate effectively with their environment. According to Greenspan’s theory, there are six preliminary developmental milestones, which underline all human intelligence and interactions with the world: language, communication, turn taking and other social, emotional and cognitive skills. The six milestones are: 1) The child’s ability to be interested in the sensation from the world as well as calm him/herself down. 2) The ability to engage in relationships with other people 3) The ability to engage in two-way communication 4) The ability to create complex gesture, to tie together a series of actions into an elaborate and deliberate problem-solving sequence 5) The ability to create ideas 6) The ability to build briges between ideas to make them reality-based and logical (Greenspan and Wieder, 1998). The Floortime approach is designed to help children that for some reason (i.e. their particular structure of the brain, etc.) did not develop one or more of those six milestones. Floortime helps the child go back to the missing milestone and re-build it, so that more advanced and complex skills will be built upon. The philosophy of Floortime is very unique and it is very humanistic in nature. It stems from deep respect for the child, and tries to use the child’s strengths and areas of interest in order to build upon new skills and to challenge the child. Also, it is most important to note that Floortime tries to bring out and nourish the internal motivation of the child in the areas of speech and communication. Rather than “teach” the child how to communicate, the parent/therapist/caregiver leads them to find their own internal motivation, from which stems the will and drive to communicate with us. Another principal extremely important in Floortime is that children learn much better through activities that involve a relatively high level of emotional excitement, especially positive one. Actions such as raising our voice to a vivid, dramatized and high-pitched sound, making broad gestures, or engaging in a pleasant physical ativities are some examples of how we can bring the child’s system to a level of excitement that is optimal for their learning. The child will be more inclined to pay attention, engage in the activity, and as a result – close more circles of communication, and even increase output of language. When we follow the child’s lead, there is more chance the activity will end up being “high energy” and stimulating, and engaging for the child, since it is the child’s interest to begin with. By following the lead of the child, the parents, caregivers and therapists try to increase circles of communication with the child. The focus is on how many circles the child closes, rather than the actual means of communication (the child can communicate with their actions as well as vocalizations, etc.; In some cases even “avoidance” is communication – if it is a response to a communication circle that was initiated by the caregiver). By responding to the child’s actions and acknowledging his/her interest, we help the child step out of their “shell” and engage in the world outside them. It is essentially like inviting ourselves to their world, reach out to them, and than pull them out to be interested in the world around them. According to Greenspan (1998), following these principals can change the structure of the brain of children that otherwise were known to “lack” the ability or the will to communicate. Floortime can be adapted to different needs and levels of communication. Recommended reading: The Child With Special Needs: Encouraging Intellectual and Emotional Growth by Stanley I. Greenspan and Serena Wieder. This book covers not only the basics of Floortime, but also brings case studies of both children and their families, including the families' coping styles with the child's condition.

Tamya Parfum - Blogala Special!

This is a reminder that Tamya parfum is now on sale for only $75, and that of each sale, $10 will be donated to Autism Community Training, a charitable society owned by parents of children with Autism, that provides autism training, education and workshops in British Columbia.

By buying Tamya perfume not only will you scent yourself with one of Ayala Moriel’s finest and most sought-after perfumes; you will also will contribute to a worthy cause!

Tamya is a mélange of pure jasmine sambac, frangipani, Japanese citron, ylang ylang, cedar and musk. It conjures up memories of the first Autumn crocuses and wild Mediterranean bluebells awakening by the first showers. The earth is covered by sprouting wild grass and the sunrays of sunset glow through the petals as they kiss the earth goodbye...

And don't forget to leave your comments on SmellyBlog's autism posts this weekend. For each post, I will be donating $1 to ACT.

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Causes for Autism

The causes of autism are mostly a mystery. It is really difficult to tell what caused autism in each and every individual with autism. There is no known way yet to prevent autism from occurring. Similarly to Cancer, Autism is now thought to be many different diseases, set off by different causes, yet presenting certain similarities between the different cases of autism.

The term Autism was coined in the early 1940’s by Dr. Leo Kanner. Kanner defined the state in which schizophrenic patients behaved in a withdrawn manner, as autism. Throughout the 40’s until the 60’s, the medical community believed that children who presented autistic behaviours in fact had schizophrenia, and they also believed that it was a result of bad parenting and lack of bonding between the child and the mother (or the other caregivers). Of course this did not make parents feel too good about themselves and did not provide them with the tools to help their children.

Thankfully, this theory and approach was tossed out and replaced by others – and more importantly – a better understanding of the autistic mind and emotional state has been achieved. We may not know the exact causes for autism, but at least we know about a few things we can do to help autistic children to develop into their full potential as adults and decrease their suffering.

The rate of children diagnosed with autism is escalating: autism used to be found only in 1 child in 10,000. Six years ago, the rate was one to 1,000, and that has doubled into 1 every 500 children. Autism is now an epidemic judging by the numbers… However, some of the increase can be accounted for by the fact that the parameters for diagnosis have changes several times in the past decade.

The causes for autism could be one or more of the following:

Genetics
There is no one gene that is known to cause autism. However, siblings to children with autism are more likely to present symptoms of autism than siblings of children without autism. Scientists hope, of course, to be able to prevent certain types of genetically caused autism (for instance: a research I recently read was about immune-system rejection in pregnant woman, that may have caused autism in their child; there may be a cure for that with adequate diagnosis prior to pregnancy and treatment during pregnancy to prevent the immune-system rejection of the embryo.


Environmental Causes
It is possible, though not proven, that certain children are pre-disposed at birth to have autism, and certain stimuli from the environment in infancy and early childhood bring out the symptoms.

Pollution and Exposure to Toxins
The many toxins in our environment could be the cause for autism. There is some research about connection between vaccines and autism, but it is not confirmed yet that vaccines cause autism. The scope of the effect of pollution is yet to be discovered…

Links to Other Conditions
Autism in some individuals is linked to other medical conditions, i.e.: Metabolic Disorders (i.e.: untreated Phenylketonuria), Congenital Infections, Genetyic Disorders (Fragile X, Tuberous Sclerosis), Dvelopmental Brain Abnormalities, and certain neurological disorders that can happen after birth. Also it might be linked to certain conditions in which the digestive system cannot break down certain enzymes, and these act as neurotransmitters which affect the development of the brain and its functions permanently.

There also seem to be a link between repeated ear infection and use of antibiotics, and the development of autism. There is a theory that the lining of the stomach gets affected by the antibiotics in a way that prevents the digestive system to properly break down certain proteins – and in return, a similar effect to what was described above may occur (i.e. proteins act as neurotransmitters and damage the brain and the nervous system).

The Right Brain Connection
Individuals with autism seem to have a dominant “right brain” which is quite obvious in the way in which they think. They also seem to process language in a different part of the brain than most people do. Autistic people are a lot more detail oriented, and have difficulty in understanding and developing symbols. Autistic people also have a larger brain than normal people. The brain seems to be swollen, especially in the front lobe and side lobes (which might explain why my daughter likes a lot of pressure on her head and forehead – perhaps it eases the brain pain?). We don’t know if the large brain causes autism, or is caused by autism. But we know that autistic people have a larger brain and that it’s not easy to live with a brain that is too large for the side of your skull!

An interesting theory I heard of only recently is that autism is caused by excessive release of testosterone in the mother’s blood stream during pregnancy (which is said to be caused by stress), and this causes autism (which also, interestingly, is described by the same researcher as an exaggerated form of “male brain”).

There are many theories, but none has been proven beyond doubt and to be honest – these are still to provide any satisfactory conclusion that will really make a significant change in the life, treatment, education or quality of living of autistic individuals and their families. We are still waiting for this to happen!

Online Resources about Causes for Autism
eMedical Health.com
Wrong Diagnosis.com
BBC
About.com
Wikipedia

Next Week:
How to Deal with Diagnosis - The 5 Stages of Loss
Autism Treatment and Therapy

P.s. Please note that none of this short article is in any way scientific. I am just trying to summarize the many thing that I read, heard and learned during my almost decade of autistic motherhood… If you want the real nitty gritty research stuff, numbers and arguments – you can easily find them online or in your nearest university. I also do not intend on arguing about the causes of autism. I don’t have any theory. All I know is that none of theories really explains to me why my daughter has autism, and none is particularly helpful in finding ways to cure her or help her… I am thankful for the many educators and therapists, that with years of experience, have developed plenty of highly effective methods of educating children such as my daughter and helping them to become the best person they can be.

What to Watch For? Characteristics of Autism

The following are early signs of autism that appear in early childhood (ages 2-6) and a bunch of different strange and unexplainable beahviours. If you are worried about your child, or another child you take care of, educate or are involved with, watch out for these early signs of autism. These symptoms can be divided into five groups, in several important areas of life and child development.

The following list of characteristisc will help you not only to determine whether or not a child or an adult needs to get diagnosed or get special help, but more importantly – help you understand the child or adult who is suffering from autism, and be able to help them in your day to day interaction with them. Aristotle said that we cannot love something we don’t understand, so therefore I urge you to learn more about people in our community that are disabled. They deserve to be loved just like any other human being. Understanding, acceptance and love are really powerful things. They can bring reconciliation and peace to the hurt ones, and help them be at peace with who they are. In return, they become a contributing resource to our community, in many ways – some obvious - such as being able to work and pay taxes; and some more subtle - such as teaching us about our own weaknesses and strengths, and forcing us to be better people every day.

Verbal and Non-verbal Communication:

• Speech and language skills may begin to develop and then be lost, or they may develop very slowly or they may never develop.
• Preference for non-verbal communication such as gestures, pointing, or reaching.
• Difficulty or inability to imitate sounds and words.
• Echolalia (repeating what was last heard). For instance: repeating questions instead of answering them, or repeating the last choice when given two or more options to choose from.
• Words may be used without their usual meanings.
• Difficulty in understanding non-verbal communication gestures (i.e. waving goodbye, pointing, facial cues and expressions)
• Language Sound Patterns: Intonation may sound flat, or inability to control how loud or soft the voice is, irregular rhythm in speech.
• Extreme difficulty in initiating communication, maintaining a conversation
• Inability to understand personal boundaries (may stand or sit too close to people when communicating with them).
• Autistic people with more vocabulary and language skills may have hard time listening to other people and flowing with the conversation (may go on and on about what interests them rather than having a back-and-forth exchange of information.

Repetitive Behaviours:

• Ritualistic actions that they repeat over and over again (i.e.: spinning, rocking, staring, finger flapping, hitting self, etc.)
• They may be overactive or very passive and can show intense anxiety or an unusual lack of anxiety. Anxiety, fear and confusion may result from being unable to "make sense" of the world in the usual way.
• They may take unusual risks with no fear of real dangers.
• Unusual postures, walking or movement patterns.
• Extreme dependence on routines, insistence on keeping everything the same, and resistance to change. Even the smallest changes in the environment may throw them off balance and make them feel intensely threatened and insecure (which often triggers extreme stress, fear, or even a tantrum).
• Restricted interest: constantly talk about or obsess on one thing, idea, activity, person, etc.

Sensory Integration / Responses to Sensations:

• Auditory and/or visual processing problems. Sensory input my be scrambled and/or overwhelming to them. Sensory sensitivities vary all the way from mild to severe hyper or hypo sensitivities.
• Unusual sensitivities to sounds, sights, touch, taste and smells
• Unusually high or unusually low pain thresholds
• Effects on Learning
• Many of the characteristics and aspects of autism discussed above can strongly interfere with the ability to learn through typical teaching methods:
• Lack of spontaneous or imaginative play (e.g. may use only parts of toys; line up or stack objects; no imaginative/pretend play).
• An inability to imitate others. (e.g. sounds, gestures, gross or fine motor movements, etc.).
• Inability to focus on the task at hand. Some will have a very short attention span or concentrate only on one thing obsessively.
• Difficulty sharing attention with others.
• Difficulty with abstract ideas (e.g. difficulty using items or toys to represent real objects).
• Difficulty grasping the concept of time and order of events.

Effects on Learning:
Many of the characteristics and aspects of autism discussed above can strongly interfere with the ability to learn through typical teaching methods:

• Lack of spontaneous or imaginative play (e.g. may use only parts of toys; line up or stack objects; no imaginative/pretend play).
• An inability to imitate others. (e.g. sounds, gestures, gross or fine motor movements, etc.).
• Inability to focus on the task at hand. Some will have a very short attention span or concentrate only on one thing obsessively.
• Difficulty sharing attention with others.
• Difficulty with abstract ideas (e.g. difficulty using items or toys to represent real objects).
• Difficulty grasping the concept of time and order of events.

Co-occurring Conditions:

• Many individuals with autism have other health problems:
• Neurological disorders including epilepsy
• Gastro-intestinal problems, sometimes severe
• Compromised immune systems
• Fine and gross motor deficits
• Anxiety and depression

These were adopted from the website of Autism Society Canada. Remember, these are various symptoms, and do not necessarily all occur in each individual suffering from autism.

Earliest Signs of Autism

Autism affects all areas of life, but most profoundly it can be defined as a condition in which shared attention is extremely challenging.

Until the age of 18-24 months, most autistic children seem to develop typically. They reach the major milestones of development in a similar age and show barely any signs that anything is out of the ordinary with their development.

The reasons for that are unclear. Is autism a disease that only sets off at 18 months? Is something in the early medical history of the child responsible for the development of autism? Or perhaps, it is only when the child has reached the age when the milestones of speech, language and complex communication are expected to be apparent, that the autism finally reveals itself in the child even though it might have been there since birth.

There are, however, some very subtle signs that may be found in infants as early as 6 moths of age that are early signs of autism.

The following is based on the article

Autism: recognising the signs in young children By Jennifer Humphries

Gaze
The quality of the gaze of an infant with autism is different. While typical infants don’t usually notice people, and may not look them in the eye, an autistic baby has a gaze that is brief and out of the corner of the eye.

Hearing
While only few autistic children have actual hearing loss or deafness, abnormalities in hearing is a common thing amongst infants with autism and many of them are suspected of being deaf. Irresponsiveness to the infant’s name being called, ignorance of loud noises that startle most babies. This is believed to be caused by either blocking out noises and sounds – either because they are too threatening, or because of lack of interest in them (and a restricted interest in a specific type of noise).

Social development and play
Play and social activity are very highly related in infants and in early childhood. Parents may notice that the infant responds in odd or unexpected manner to their play and communication initiatives. They may either not be interested or not seem to enjoy the types of play that most infants naturally like from very early stages in their life.

The Three Criteria for Diagnosing Autism

It’s really hard to get away from a diagnosis of autism if you have it… All it takes is basically saying “yes” to these three distinctive criteria:

1. Impairment in social interaction
2. Impairment in communication
3. Restricted interest

Sounds familiar? Reminds you of anybody you know? Read on further for more details. The reason I say that is because the earlier the diagnosis (preferably in early childhood), the better the prognosis. Autism may not be cured, but with an early intervention program and a special education plan throughout school, a child who has autism will be able to grow into their full potential and enjoy a full and happy life.

First of all, let me define these three criteria and how they are used in the process of diagnosis. It is obviously more complex than I presented it in the first sentence of this article (I like to exaggerate sometimes…). A person requires a total of six or more characteristics from the above criteria, with at least two from A and B, and at least one from C. There are also additional criteria for diagnosing autism which I will refer to in the end of this article. The following is adapted from the DSM-IV as per this site, with additional notes from my own experience and from other online resources. I am not trying to break any news here, just compile together a list for reference.

A. IMPAIRMENT IN SOCIAL INTERACTION

Qualitative impairment in social interaction. If a person has at least two of the following characteristics that might raise a red flag:

1. Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction. Examples:
1. Laughing, crying, showing distress for reasons not apparent to others
2. Little or no eye contact
3. Not responsive to verbal cues; acts as if deaf although hearing tests in normal range.

2. Failure to develop peer relationships appropriate to developmental level
   a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people. Examples:
1. lack of showing, bringing, or pointing out objects of interest to other people
2. Autistic children may find it difficult to interact with their own age group and may prefer to interact with adults (or less commonly – with babies).
3. Lack of social or emotional reciprocity. Examples:
1. Not actively participating in simple social play or games
2. Difficulty in mixing with others
3. May not want to cuddle or be cuddled
4. Repetition of own message and responses that are inappropriate to the messages communicated from the people involved in the interaction

4. preferring solitary activities, or involving others in activities only as tools or "mechanical" aids, i.e.:
1. Prefers to be alone; aloof manner
2. Choose solitary activities that do not require interaction with others (i.e.: puzzles, beading)

B. IMPAIRMENT IN COMMUNICATION

Qualitative impairments in communication as manifested by at least one of the following:

1. Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
1. Repeating words or phrases in place of normal, responsive language
2. Difficulty in expressing needs; uses gestures or pointing instead of words
3. May also lead the person to what they want instead of using gestures (hold the person’s hand and bring them to where they wan to show them something)
4. Unresponsive to normal teaching methods

2. In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. Stereotyped and repetitive use of language or idiosyncratic language
4. Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

C. RESTRICTED INTEREST

Now that’s where the fun begins. While the other behaviours may also be common to other conditions, such as language or developmental delay, this is where all the cliché autisistic beahaviours show off the most. Each individual will of course have their own restricted interest, and these can change throughout the years. But nevetheless, this is what makes autism look so special to the laymen. From the outside, these could even be perceived as charming egocentric personality traits. In reality, they are a method in which the autistic person is trying to make their own life a bit more stable, and put order in an otherwise extremely chaotic world. The restricted interest bring a sense of order and predictability, which is calming and centering.

Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following is a reason to be paying close attention and seeking help or diagnosis for your child:

1. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

1. Extreme interest in particular subject busses, trains, birthday cakes, pumpkins, etc.
2. Obsessive counting or spelling
3. Inappropriate attachments to objects

2. Apparently inflexible adherence to specific, nonfunctional routines or rituals

a. Insistence on sameness; resistance to change

b. Repeat the same behaviour over and over again

c. Sustained odd play

3. Stereotyped and repetitive motor mannerisms, i.e.:
1. Spinning
2. Hand or finger flapping or twisting, or complex whole-body movements
3. Slapping or pinching or biting hands or other repetitive self-hurting behaviours
4. Persistent preoccupation with parts of objects, i.e.:

a. Spinning objects

b. Extreme attention to particular details or belongings of a person rather than to the whole person – i.e. a person’s shoes or hair or zippers, etc.

c. Opening and closing doors or containers, flicking lights, etc.

HELPFUL RESOURCES

Autism checklist

Characteristics of Autism

Developmental Chart

Five Early Signs of Autism

First Signs

Autism: Recognizing the Signs in Young Children

Autism Characteristics

Happy Thanksgiving!

Pumpkins, Moss Landing
Originally uploaded by yaxchibonam.

Happy Thanksgiving to all of Pumpkin Blog Canadian readers!
Tamya and I will be making out favourite treat ever - our infamous pumpkin pie. Tamya is also very likely to start working on her first pumpkin carving project. No school today! Yey!

Choice in the Garden of Forking Paths

Caderno das estrelas 35/Star Book serie nº2, originally uploaded by magic fly paula.

Tamya and I were walking this morning in a garden of forking paths in the rainforest. A beautiful day, sunny but not hot, autumnal just enough to wear a sweater without sweating. The dead conifer leaves piling on the ground warmed up to the sun which in return to its warmth had to give away a distinctively sweet chypre aroma. As we approached the forest, and Tamya decided to go in instead of observing the ducks and Canadian geese in the Lost Lagoon. From than on she was the navigator: in each intersection I asked her to make a choice, by either pointing to where she wanted to go or leading us there. This reminded me of how far we have gone since she was little about communicating to me what she wants, and also made me contemplate once more the challenge of making choices, of screening out information, and of structure and discipline versus choice and leisure.

Our hardest days and most difficult times are not during the week, when the routine is rather structured, but rather – in the weekends, when the boundaries are loose, you can choose whatever you want, and there are so many confusing things to choose from. Quite overwhelming, actually, when you think about it.

Imagine this metaphor: Tamya is in a maze. She is not sure what she is doing there. She only knows that she feels terribly uncomfortable. What she sees as options to choose from is not just the next cross of paths but also the possibilities of climbing over the hedges, digging underneath them, trying to go through them, and perhaps even consuming them until an escape hole is formed. Of course these are all excellent possibilities in theory, but these are probably just 4 ideas out of perhaps a hundred that goes through Tamya’s mind in a few seconds, in a state of panic and extreme discomfort. This is no picnic.

Yet, we expect people like Tamya to make choices every day. And we do so because we care. Making choices, also known as decision making, is one of the most important life skills, and as a parent I want my child to learn that skill and be able to survive and live a happy and healthy life. We need to make choices all the time. Helping a young child with autism or a similar challenge (i.e.: anxiety around changes and transitions) to learn that skill is perhaps more important than any other life skill. Choice is what separates us from other forms of existence, and without making choices, the life of my child will be lead by others!

This can be done everyday, simply by helping the child narrow down the options. Do you want to turn left or right? What is your choice – salad or apple? (This is also a known trick to get your child to acquire healthy nutritional habits). Hopefully, the child will gradually develop the tools to recognize a few options out of myriads of possibilities that exist at any given time, and be able to make a choice within a reasonable time frame.

P.s. Comment on this post or on any of the next few Blogala posts over the weekend and I will make a $1 donation per each reader who commented to the Autism Communication Training of BC

Definitions of Autism

The following is a collection of definition of autism that I found on the web. I picked the ones that I feel are the most accurate, and also added my own definition, which is absolutely subjective, from the point of view of a parent raising a child with autism for nearly 10 years…

Brain disorder that begins in early childhood and persists throughout adulthood; affects three crucial areas of development: communication, social interaction, and creative or imaginative play.
Loyola University Health System

A lifelong, nonprogressive neurological disorder typically appearing before the age of three yeas. It is characterized by language and communication deficits, withdrawal from social contacts, and extreme reactions to changes in the immediate environment.
Carbon-Monroe-Pike

Autism: Autism is a form of pervasive developmental disorder with an unknown origin. It can range from high functioning to severe in nature. Symptoms are a marked lack of awareness of the feelings of others and little or no social interaction or communications with others. Children with autism are often described as "within themselves" and may seem to avoid affection and love. Many children with autism will not talk, are self-isolating and self-stimulating. Routines are important because many children with autism cannot easily handle changes in their environment. They can be taught self-care, social skills and language skills.
Kentucky Cabinet for Health and Family Services

Autistic Disorder: “(Also called autism.) - a neurological and developmental disorder that usually appears during the first three years of life. A child with autism appears to live in his/her own world, showing little interest in others, and a lack of social awareness. The focus of an autistic child is a consistent routine and includes an interest in repeating odd and peculiar behaviors. Autistic children often have problems in communication, avoid eye contact, and show limited attachment to others.”
Yale Medical Group

Autism Spectrum Disorder (ASD): Autism is often referred to as a "spectrum disorder," meaning that the symptoms and characteristics of autism can present themselves in a variety of combinations, ranging from mild to severe. The Autistic Spectrum includes Autistic Disorder (AD), Asperger Syndrome, (AS), and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). Childhood Disintegrative Disorder and Retts Disorder are not usually considered part of the Autistic Spectrum, although they are grouped with them in the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV).
ACT-BC


Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. One should keep in mind however, that autism is a spectrum disorder and it affects each individual differently and at varying degrees - this is why early diagnosis is so crucial. By learning the signs, a child can begin benefiting from one of the many specialized intervention programs
Autism Society of America


Autism is a bioneurological disorder, not a mental illness, which affects the functioning of the brain. Some theories suggest that it may be caused by genetics, viral and/or chemical exposure. Autism causes lifelong developmental disability, including problems with communication, social interaction and physical activities. The major characteristics include slowness in understanding message; problems of the sensory system (touch, taste, and smell), hearing and language disorders, inappropriate social responses (screaming, unprovoked tantrums, laughing, crying, resisting touch, cuddling, and eye contact); sleep disturbances, and in severe forms the child may injure themselves, constantly move various body parts, and show an apparent insensitivity to pain and/or constantly isolate themselves from their parents and all others. There isn’t a cure for autism, but there are a wide variety of treatments that have been effective.
Eagle Mount Billings


My own very subjective definition:
Autism is a neurological disorder that affects all areas of life. But more so, it is a way of life – thinking, feeling and experiencing and relating to the world. People living with autism experience the senses differently than we do. The intensity level and the form in which they perceive the senses are different and we can only imagine how it is like to be experiencing the world the way they do.

Just like all people, individuals with autism are very different from one another in every aspect: Personality and Temperament, Intellectual Abilities, Physical Abilities, Physical Appearance and so on and so forth.

Tomorrow:
The early diagnosis and the signs of autism…

P.s. Comment on this post or on any of the next few Blogala posts over the weekend and I will make a $1 donation per each reader who commented to the Autism Communication Training of BC

Autism Blogala!!!

Throughout the month of October, SmellyBlog will be fundraising for a very special organization based in Vancouver, BC: Autism Community Training. This is a parent-owned and run charity organization that runs workshops, provides resources and supports children and adults with autism as well as their family and people who interact with them. The main goal of this organization is to enable parents, professionals and para-professionals to support children and adults with Autism Spectrum Disorder to live productive, satisfying lives within their families and communities. They bring in experts from around the world to provide workshops in affordable prices for parents, educators and anybody in the community who is who cares about the individuals that suffer from this neurological disorder, or is simply fascinated by the riddle that is autism.

So visit us and the other participating blogs this month for very special blog events in the first ever Autism Blogala:

- Giveaways

- Contests and Riddles - win lots of cool prizes!

- Silent Auctions

- Charity Sales of selected fragrances from Ayala Moriel Parfums (profits proceeds to ACT-BC)

- Comment & Fundraise (leave a comment and the blogger will donate a pre-set amount to the charity)

As far as perfume blogging is going – this month is going to be extremely exciting. Here is an overview of what is planned for this month scent-wise:

- Behind The Scents of one of Ayala Moriel’s most haunthing perfumes

- Chypre Articles and Perfume Reviews

- Leather Article and Perfume Reviews

- The Story Behind a Leather Bespoke Perfume

- Perfume Adventrues with Little Duckling (= my daughter)

- And of course – very Halloween appropriate – the use of licorice and anise notes in perfumes + reviews of licorice scented perfumes!

Autism Blogala Participating Blogs:

Perfume Critic

Monkey Posh

Photograph courtesy of Arturo de Albornoz - the signature bag of Autism Centre of Dubai

October is Autism Awareness Month

Autism Awareness Ribbon, originally uploaded by Kaedibyrd.

“October is Autism Awareness Month”. This is what the poster on the hospital’s wall said. I stared at it puzzled and fatigued, 6 years ago, wondering how come this month was also chosen by my daughter to leave the womb and start breathing the polluted air of a blue planet in the solar system.

I was shocked no more when the hospital developmental team had given me the worst prognosis and labeling they could possibly come up with for her condition, and presented it in their doom-day style. Luckily, I had a whole year to prepare for what they are going to say. There is only one hospital for children serving the over 4 million British Columbian population. Therefore, waiting lists for diagnosing children with developmental delays are extremely long, which gives worried parents enough time to get therapy and informal diagnosis from more people-oriented community professionals. In fact, the worser the diagnosis – the better for her. She will get more help. And so she did.

This month I will be celebrating my only daughter’s 10th birthday. I will also be celebrating my ten years of motherhood, and ten years of living with autism 24/7. My daughter is perhaps the single most influential person in my life, and my most beautiful inspiration for anything from mundane tasks of folding socks and preparing lunch boxes, to more poetic activities such as perfumery, photography and writing.

To honour my daughter and muse, I have decided to dedicate all my writing to SmellyBlog this month to all the things that my daughter loves, and also have a few Autism related blog entries. Therefore, this month will be dedicated to pumpkins, strawberries, ice cream, birthday cakes and lots of other Halloween candies and anything else my daughter obsesses about. There may be also a few little short stories or articles about autism with great references and resources, to increase awareness – as this is, after all, Autism Awareness Month.

There will also be an Autism Blogala – lots of blog events, in this blog and any other blogs that will be joining us, to raise funds for Autism community, education and research organizations around the world. More about this in the next post.