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Treatments for Autism + Tips for Parents

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.

Visit Tamya's Pumpkin Blog to read about other methods and approaches for treating autism, including Sensory Integration, Soical Stories, ABA, Biomedics, Dietary Intervention, Music Therapy, Art Therapy, Animal Therapy, and more..

A few tips 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.

The Five Stages of Loss

The 5 Stages of Grief (or Loss)
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes)

When a child is diagnosed with a disability, the parents often go through a similar process to that of grieving – also know as The Five Stages of Loss (or Grief). There is a lot of variation in how the process is experienced: some experience every single stage, some don’t; some stages may last years, other may last only a day or two. It’s really different from one individual to the other.

Learning that your child is “not what you thought s/he is” is more difficult than it seems from the outside. You have to say goodbye not only to the dreams (and unfortunately also expectations) for your child’s future, but also let go of all that you thought they were until this point. Their behaviours all of a sudden bare a different explanation. You think you understood and knew your child, and all of a sudden you don’t.

It’s interesting to note, that once your child grows up, and gains enough conscious to understand that they are different – they in fact will go through a similar process. I can’t speak about the process from this point of view, but you can read stories like that, for instance this story I found on the internet from the point of view of a young lady who has a learning disability, and also this article that talks about the process of accepting one's diability.

I would like to share with you the process I went through with my daughter diagnosis, from a young mother’s point of view.

DENIAL
Through her first two years, Tamya seemed to develop like all typical babies do. For the most part. She seemed to be a happy baby, and for the most part followed the main developmental milestones and reached most of the main ones at the average age: she smiled at 6 weeks, turned fron side to side around 3 months, was sitting at 6 months, crawling at 8 months, and learned how to walk when she was one year old. The things that were a bit unusual were very subtle, and could be only discovered in retrospect, knowing that indeed she did have autism: lack of interest in toys in general, fear of furry animals, grinding teeth, and certain vaguely autistic responses to social cues (i.e.: she did not wave goodbye). At the age of 18 months and on, Tamya was curiously walking the opposite direction when we were going on walks, or would walk at least 10 meters ahead of us (unawareness of danger), and was also extremely fascinated by chasing her shadow and going up and down stairs.

At 18 months some of our family members started to express concern for Tamya’s development. She went through elaborate medical examination to see if anything is missing in her diet, etc. We kept thinking that she is fine, as for the most part she seems to be developing normally, and she was also very communicative (thanks to the tremendously expressive saucer-size eyes she’s got). Her attentive and intelligent observation completely fooled us to think that she is probably going to start talking like nothing has happened any day now. This seemed to make sense, because the way she learned how to walk was very slow and cautious. She never fell: when she sensed loss of balance, she gradually lowered her bottom and sat down, until she perfected her walking skills.

ANGER
The shit has finally hit the fan when she started daycare at the age of three. It wasn’t so much the language that alarmed and worried her teacher, it was more her perseveration and her unawareness of danger. Tamya spent her first month in daycare opening and closing drawers, flicking lights, playing with the curtains, and trying to find the exists through which she can escape daycare and be left alone without those demanding adults!

After about a month in daycare, her teacher couldn’t keep her worries to herself, and she just told us, bluntly and courageously, that she is really worried, and from her experience from another child she educated – she thinks that Tamya had autism. You can imagine my rage: “how dare she think that MY child, who has the most intensely expressive EYE CONTACT could POSSIBLY have AUTISM???!!!”. But it only took about two more weeks to get over that outrageous anger as well as mistrust (after all, who is that teacher anyways? She is not a doctor, she is not en expert, she doen’st have the right to diagnose my child!!!”).

Than the worries and the fears started sinking in real fast. Is our daughter going to keep wearing diapers for the rest of her life? Is she going to ever talk? Is she going to have a good life? Do we still love her the same way? It was an emotional roller-coaster, that we couldn’t handle for too long…

Two weeks later, we woke up at 6 in the morning for an emergency meeting with a child and family psychiatrist who happened to speak my native tongue and also have the talent to calm people down and give them reasonable and logical solutions in the most stressful situations.

DEPRESSION
However, a few more weeks later, Tamya’s biological father (than my husband) took off and went back to Israel, and I became a single mother to a child that had no diagnosis yet. So I had to go through the process of grieving in two parallel avenues – the one related to the loss of the relationship, and the other to the loss of who I thought my daughter was until now. The reason I am telling you this is not so that you think that I am such a courageous and strong woman (usually the response I get from people when they hear my story). I am telling you this because it is very common that families break when a child in the family is diagnosed with a disability. The stress, fear, worries and tension it adds to relationships is enormous, as if raising children and maintaining a relationship isn’t challenging enough as it is. It’s a real test for the strength of a relationship, and parents should get all the support they can get and need in order to keep their family intact and attend to their own personal needs and maintain a certain level of sanity.

From this point on, for about at least a year if not two, I lived constantly in the two stages of both extreme depression and worry on one side, and a constant bargaining with the systems – so that my daughter would get all the support she is entitled to – the community health nurse got involved, came for home visits and gave me tips for increasing language and managing behaviours, an occupation therapist came on board almost instantly after than, we got assessed for speech therapy right away as well, and by May, we started receiving weekly speech therapy sessions through the Centre for Ability.

BARGANING
As you see, I spent very little time in the other phases. I really didn’t have much time. I am a practical woman (especially when it comes to taking care of my loved ones), and so within two months after the “breaking news” from the daycare teacher, I had almost all the services available lined up for my daughter, and she was on the shortest waiting lists all the time. I just wouldn’t have let her postpone her “getting better” anymore than I did when I was denying her condition before. There was a huge element of guilt there too. I should perhaps add GUILT as a stage in the process, as it is experienced by most parents to children with special needs. You always feel that you should have done better, if you only didn’t or did do this, or that, your child would have been better off now… It’s a frustrating, disharmonic feeling that can either freeze and paralyze to depression and numbness, or it can make you push yourself and everybody else harder and achieve results. I tried to do the latter.

It wasn’t until Tamya was four that she was officially diagnosed with autism in Sunny Hill (a division of BC’s one and only Children’s Hospital). This was after she got ear tubes installed, and hearing impairment was ruled out as a factor in her language delay. At that point, I was prepared for the worst. I already knew she has some form of Autism, because she was informally diagnosed in a hospital in Israel a few months earlier in the winter (due to grandparent’s request, they couldn’t wait to have the diagnosis, where I ddin’t really care what she has as long as it’s getting treated!). Tamya got pretty much the worst diagnosis they could have possibly come up with, which none of her educators could agree with – severe autism, apraxia and a moderate cognitive delay. While we all knew she has autism (high functioning) and apraxia (dyslexia in speech and challenges in sequencing) cognitive impairment was out of the question. That girl is simply too cunning and intelligent for that. But labeling helps, apparently, in getting funding for therapy and help in the school system. As long as you see your child as a child and not as a walking example from the DSM-IV, and give them all the love they deserve multiplied by 100, labels can’t harm. In fact they prove to be effective sometimes when you need to explain why your child is saying the same thing over and over or throwing unexplained tantrums in public…


ACCEPTANCE
I think I have pretty much reached the stage of acceptance. I don’t feel guilty about denying my cild’s condition for the first suspicious year and a half, and my child is happy and gets what she needs to be healthy and reach her potential. I may need to go through similar phases when she grows up (as disabilities are a lot more apparent once a child grows up) and becomes a teen and than an adult. And even more difficult – when she becomes aware of her condition and goes through the grieving process herself. But I feel I am strong enough to accept what my fate has put on me and I woulnd’t exchange my child for a “normal” child for anything in the world. I can’t imagine my life would be nearly as wonderful as they are without her and without her charming yet sometimes frustrating autism.

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.

Thank you for reading SmellyBlog! After Afgter 8 months of existence, we know that SmellyBlog is blessed with at least 100 unique readers per day!
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Image credit: Sitvanit Hayore, Originally uploaded by Holy Land Essence


Etiology and Causes of 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.
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