By Tim Welsh
One of the most frequent questions I get being on the front lines of social media is " My child just got a diagnosis of autism, now what?" This is where I offer a disclaimer. If you are still fragile and faint of heart you may want to pass on reading this post. I am happy to consult with you in a more gentle and private way if you give me a call, direct message me via twitter or Facebook . This blog is intended to give those that have already strapped on their warrior armor and seriously ready to go to battle this is the boot camp overview.
I would much rather somebody tell me the truth day one, than string me along. We often say you meet one individual with autism, you have seen one version of autism. The same goes for treatments, services and support plans. There is one major wrench though, your geographic location plays a huge role in what is available and how to proceed. I am going to give you the mile high version as I see it. I would love for others to jump in and correct me if they feel something is incorrect or missing.
Once your loved one gets the diagnosis you will be pointed in a few different directions. Within the medical system you will be directed towards therapy at the lowest and most basic levels. They will offer up vitamins, minimal speech, occupational , and maybe physical therapy. This of course depends on your state laws and your personal insurance program. The educational system will offer some basic instruction. Usually this is along the lines of PEC (Picture exchange communication system) Discrete trial training, Floortime, Play or modified ABA (Applied Behavioral Analysis)
When you pose the question to the general public. You will first be pointed towards Autism Speaks. They offer a 100 day kit which outlines what to expect and the major national service organizations. If you are lucky in residing in a geographic location supported by these systems there may be resources available to your family. I have reviewed a number of versions of the kit, little applied to rural areas, and very little focus is provided on getting started with biomedical intervention.
As far as mainstream "Medically proven" and insurance approved / supported therapy by the psychiatric / medical establishment a full ABA program directed by a BCBA Board Certified Behavior Analyst is the gold standard. The battle again with setting up ABA day one is the limits put forth by your insurance provider and availability of therapists and support personnel in your area. Often it is left to parents to recruit and manage the training and staffing of their child's program. This comes as a shock to many parents. Also many are dismayed to find out research has shown the effectiveness of this therapy alone is 50%.
The above therapy does not address the underlying physical and co-morbid issues your child is having. Most of our loved ones will have a combination of these issues and more. Attention, Anger, body control, gut issues (constipation and/or opposite ), sleep issues, food allergies, seizures, outbursts, meltdowns, speech issues and much more. To address these underlying causes you must seek support from the biomedical professional community.
Before you think / label this community of parents and professionals as fringe think about this. 1 in 3 families in the United States are now serving a family member a gluten free meal. This started through the actions and results fought for by the parents that came before. Many of our families have seen improvement by including Methyl B12 in their child's program. These results have resulted in the inclusion of the B12 addition in many popular energy drinks. Because it works. I could include many more examples. Some of the leading organizations in the biomedical field sponsor the Age of Autism. I highly recommend visiting all of our sponsors and find out what they have to offer.
A side note here. It is so easy to become complacent and follow the advice from your school, Doctor, friend or therapist and lose track of precious time. There are always new programs, resources, laws , products and therapies coming to market daily. During our journey with Tanner, I have seen a multitude of therapies come and go. At one point, I calculated there were about three hundred options. All with three possible outcomes. One, they improve the response and quality of life for your child, they make things worse or they do nothing. No one individual will give you the magic combination for your child.
I am not writing this to depress you. I am writing this to impress you and empower you to be your own advocate. The parent warriors who have come before have forged a trail. We are now heading into the unchartered water of adults with autism. The trail we blazed is still full of thorns, quick sand and pot holes. The good news for you is we are not going anywhere. This is a Fraternity that none of us wanted to join. We are hazed and bullied at every turn. Not usually by each other but by a system that has limited resources, lacks big picture / flexible focus and does not take the time to consider that all our child's issues are related.
I know there are others out there who have degrees but I just again make a pitch for you to trust your instincts. Yes I would be remiss if I did not acknowledge there are charlatans. I have been taken by a few. Yes there are crack pot unproven fringe therapies. We have put Tanner through a few. Yes the system will give you as little as it can to protect its limited resources. My advice is fight, fight, fight, and fight. Be the squeakiest wheel. Recovery is possible. I have seen it. Autism is not a new normal. They know things must be done. The law is on your side. I do not care if your child is 3, 5, 10, 15, 22, or 35 there are things you can do for them.
Once again the team at The Age of Autism, it's sponsors, and myself are here to help in anyway we can. You do not have to fight the system alone. We have had great luck in forging our own trail for Tanner. Your local service and religious institutions may need to be educated and you may need to ask directly and clearly for help. It is in all of their mission statements to help but again Autism is new to them. Not a day goes by that I do not learn about another grant, support program, waiver, new law, or therapy. God Bless you and your family. Prayers for the Journey. TannersDad Tim
Yes the squeaky wheel gets the services. Scratch the chalkboard!
Tim Welsh, is one of the most active and influential Parent Advocates for Autism. Avid Speaker, blogger, and Tweeter (@TannersDad). Tim works to build unity within the Autism community, Gain Insurance coverage reform, End Restraint & Seclusion, Advocate for services, prevent wandering and much more. Tim & his wife Cheri have one son Tanner (16).
“I have a son he has autism, but, I also have dream. I dare dream of a world where profound regressive autism is not only treatable, but is also preventable”