Friday, May 25, 2012

Autism Diagnosis: How to Move Forward With Treatment and Therapies

I like to periodically update readers on Bella's treatments and our experiences with her autism.  I also have many parents ask me about my thoughts on certain behavior interventions and treatments for autism.  So, here's a recap of where we've been and where we are going:

Gird your loins peeps, this is going to be a long read.  If you think your child might have autism, have a child with autism, or know someone who does, this may be a beneficial read for them.  I have a daughter with autism who is now 3.5 years old and I have been researching treatments ever since her diagnosis.  I am also receiving my Master's in Special Education and have focused most of my research on the topic!

So, here we go...

How I knew my child had autism:
  • Lack of eye contact
  • Lack of response to verbal stimulus (could call her name over and over with no response)
  • Inappropriate play (didn't play with toys correctly, usually lined them up or threw them)
  • Delay in reaching milestones (sitting up, crawling, walking late *18 mo)
  • Delay in speech (Bella experienced speech then stopped speaking all together)
  • Spinning, focus on wheels, head banging, odd noises and repeating of sounds
  • Intense tantrums
  • Seemed unconcerned that I left the room
  • Odd sleep patterns
  • Sensitivity to textures in foods and materials (very picky eater)
  • Lack of proper safety boundaries (would walk directly into freezing ocean and not experience sensation of cold), would put hand under scorching hot water without flinching
*These are just the most prominent symptoms I noticed, there are many more and they differ per chid (check this out for more)

What did I do when she got diagnosed?
*After having a few good cries
  • Got referrals from a pediatrician for early intervention through the state
    • Before a child turns 3, they will have in home therapies (speech, OT, PT as needed), this is covered by the state and is free to you.  Get started ASAP!
    • Your child will first be observed to ensure the early intervention team concurs with diagnosis
    • Studies show that the earlier a child with autism begins therapies, the better responses they have towards recovery
  • Signed up for Applied Behavior Analysis (ABA).  For military folks, this is covered by ECHO (ask about it).  
    • This therapy has been the most helpful and has had the GREATEST impact on Bella's development thus far.  It is really hard at first, and you feel like they are torturing your child but... give it time, you will be amazed at what you see!
  • Began a Gluten Free/Casein Free diet
    • It was the VERY FIRST THING I DID
    • Bella basically never had solid loafs (poo)... ha, ha. She had loose stool at all times.  This was mostly a reaction on milk products and it caused her much discomfort.
    • Here's a helpful article on GFCF diets 
    • It a nutshell, most parents of ASD children feel that their children cannot digest gluten/casein due the to weakening of their digestive walls (or leaky gut).  Therefore gluten/casein seep into the blood stream creating an "opiate" effect (increased tantrums ect).  Most studies are not conclusive but overwhelming parental feedback supports a strong  case for removing gluten/casein from the diet.
    • This diet seemed overwhelming at first but once we got the hang of it, it became second nature
  • When you child turns 3, they will end early intervention and move onto a special education preschool (covered by the state and coordinated through your early intervention case manager)
    • Sending Bella to a special education preschool was really hard on me as a parent.  It made me feel sad that she had to go to a "special school" but, it has made a HUGE impact on her development and her behaviors in general.  She speaks more, is more patient, and tolerates other children better!
  • Be sure that when your child turns three, you ask your pediatrician for a referral for speech, occupational, and physical therapies (depending on your child's need)
    • Although kids get speech, OT, and PT in special education preschool, they can also get it outside of school!
Bella's therapies/treatments now:

1- Special education preschool (Mon-Fri) 8:30-12:30 (she gets speech, OT, and ABA in school)
2- ABA therapy in home (Mon-Thurs) 2 hours a day at home with a therapist
3- Speech/OT- 1 hour a week outside of school
4- Gluten/Casein Free
5- Biomedical treatments (just starting)

BIOMEDICAL TREATMENTS: Our newest journey... 

I have waited to begin biomedical treatments on Bella until she was a bit older.  She is now 3.5 and we are starting the process.  I changed her pediatrician to a DAN Pediatrician (Dr. Bob Sears) so that we could move in this direction.  I highly recommend searching out the counsel of this type of doctor.  Most of theses doctors have done extensive research on autism spectrum disorders (Bella's doctor wrote a book of his own) and will be a great advocate for your child.  They will be sensitive about vaccinations and more interested in treating your child from the inside out.  I had to battle with some of her previous doctors about my concerns and desires for Bella's treatments.  Once I changed to this new doctor, we are on the same page all the time... what a blessing.  

*Blog post to follow about the biomedical treatments we will be starting on Bells.

My conclusion after research on Biomedical treatments for Bella:
In this article (and many like it) it is evident that not all interventions will be effective on all children with autism.  The percentages on most treatments were split down the middle (worked for half the population). You may look at the results and think these treatments are not worth it but, when I look at them....I see a fighting "chance".  It's hard to pass up a treatments when there is a chance your child might become a more productive member of society who can one day care for themselves? I'd hate to have not tried these interventions on my daughter only to find later that they could have made a difference.  The fact is, biomedical treatments may show little to no positive effects on Bella, cost us money, and lots of stresses.... however, I feel this innate need to fight for Bella to have this chance. Ultimately, she is in God's hands:)
From the article above, of the 192 participants takingVitamin B12 injections (one of the biomedical treatments:

4%(experienced worsening symptoms)   33%(experienced no change)   63% (improved)   

A good quote from one of the sources I read:
"Autism is a very complex disorder, and we do not fully understand it.  However, there are many biomedical abnormalities that have been identified, and most can be treated to some degree.  By following the testing and treatments outlined above, many children will improve to some degree, and some will improve dramatically.  Sometimes one treatment shows great benefit, but it is more common that each treatment helps a small amount.  However, the cumulative effect of multiple treatments can be substantial.  Younger children are the ones most likely to benefit, especially those who had a period of normal development followed by regression, but older children and adults can often benefit from the same treatments outlined here." 

A useful "How-to-PowerPoint" for starting Biomedical treatments (from a mom who has done it):

Whew.... that was a lot of info!  My head hurts, does yours?

Good luck!

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