I have been a member of many social media groups related to Autism for a while now. Every now and then there would be a new member with lots of questions. This is my attempt to answer most FAQs by a parent of a kid with a recent diagnosis. This page will be updated regularly.
Our kid was recently diagnosed with Autism Spectrum. Where do we start?
It is important to understand what Autism is and what it is not before you can talk about protocols, therapies, and treatments. The websites mentioned below will get you started in understanding the diagnosis better.
https://www.autismspeaks.org/
https://ummeed.org/
http://www.autism-help.org/
https://www.centerforautism.com/
Are there any tests that I can do at home ?
Medical, probably not. But there are widely available assessments that you can do at home. It is useful to do these assessments every 3-6 months, so you can see where your kid stands, and what changes need to be made to his routine. The link below from CDC provides information about these tools.
https://www.cdc.gov/ncbddd/autism/hcp-screening.html
I do not trust the diagnosis. Should I get a second opinion?
It is not uncommon. Getting a second opinion might also help us to put any doubts to bed. It also helps us get past our denial, and we can start working towards helping the kids in every possible way we can. Look for autism diagnosis specialists in your area, be aware that some of them might not be covered by your insurance.
I feel like I am alone in this. Where do I get more information? it is overwhelming.
I understand feeling the same when we got our kid's diagnosis. there are a lot of social media groups. Most of them might be private groups and you will have to request access. These support groups are necessary for our journey. We need all the help we can get, whether it is moral support, guidance or additional information from those that have been through this before us.
Do I have to join all these groups?
I am not saying you have to be a member of these groups. These are just to give you an idea of what's available. There a lot more groups out there, feel free to join, what you like. Apart from these I also follow research organizations on twitter, influencers on Instagram.
AUsome Moms
https://www.facebook.com/groups/674120716013153/
Autism Dads In It Together
https://www.facebook.com/groups/798672493573079/
Autism Dads of Greater Dallas/Fort Worth
https://www.facebook.com/groups/AutismDadsofGreaterDallasFortWorth/
Whole Plant Access For Autism Support Group
https://www.facebook.com/groups/wpa4a/
Texas Autism Insurance Discussion Group
https://www.facebook.com/groups/TexasAutismInsuranceDiscussionGroup/
The Nemechek Protocol for Autism and Developmental Delay
https://www.facebook.com/The-Nemechek-Protocol-for-Autism-and-Developmental-Delay-179420979261238/
The Nemechek Protocol for Autism and Developmental Delay
https://www.facebook.com/groups/2533376023549346/
Healing with camel milk
https://www.facebook.com/groups/225663314116369
What is the GFCF diet? Should I start it ?
GFCF is short for Gluten-free Casein-free. In this diet, you avoid everything gluten and casein ( usually found in dairy products). It might be beneficial if kids are known to have an intolerance for dairy or gluten. Even if they don't, some swear by improvements in behavior after starting the GFCF diet.
What is bio medical intervention ?
According to www.autism-help.org "Biomedical intervention for Autism or Asperger’s syndrome consists of a wide range of therapeutic approaches for treating these developmental disorders in children, adolescents, and possibly adults. A major problem for most biomedical interventions is not meeting the criteria as evidence-based treatments due to a lack of rigorous research. This does not necessarily mean biomedical interventions won't help, but caution and personal research are recommended."
Where can I get more information on Biomedical intervention?
https://tacanow.org is one of the go-to places to get information on biomedical intervention.
What is Early childhood intervention?
It is widely believed that intervention at younger age results in better results/improvements. Government agencies provide ECI services for kids until they are three years old. They would also help with IEP and ARD as the kid becomes eligible for PPCD(Preschool Programs for Children with Disabilities).
What is ABA, ST, and OT?
These are the most commonly prescribed therapies for kids on the spectrum. More details can be found here
What is IEP, ARD?
The Individualized Education Program, often called the IEP, is a legal document under United States law that is developed for each public school child in the U.S. who needs special education. Here is more detailed information on how and IEP is written.
This link is from our ISD. most of the information is generic and can be applicable to anyone.
What is Nemechek Protocol (NP) ?
This protocol is something I have personal affinity and bias for. On a high level, it involves three ingredients.
olive oilfish oilInulin
It is hard to explain the science behind it, it will try to put it in laymen terms. Inflammation in the body directly affects our actions/brain. NP helps reduce bad bacteria in the gut and balance the ecosystem. I would recommend anyone interested to read this book. There are a lot of research studies that link many ailments directly to gut inflammation.
Does Camel milk help with Autism and Speech?
Maybe, maybe not. It is believed to be rich in anti-inflammatory and anti-viral properties. Personally, we believe it helped alleviate some of his gastrointestinal issues. As with any advice, do your own research. I have read this book and found it to be very useful.
Should I give my kid vitamin supplements?
My personal opinion is not overload the kid with supplements unless he is medically diagnosed to be low in a specific vitamin and has been prescribed by a licensed physician. We do not want to give anything in excess unless we understand all of its effects and implications. Do your own research, this question usually gets a different answer from every parent.
Elderberry fights colds and improves immunity. Can I give this to my kid?
Elderberry is a know bio-marker for ASD. It is believed to increase cytokine production. Kids on the spectrum are believed to have excess cytokine levels. Additional cytokine production might lead to a cytokine storm, which in some cases could be fatal.
https://tacanow.org/family-resources/sickness-prevention-treatments/
Additional Information can be found in resources page.
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