Dachel Media Review: Adapting to Autism in 2014
Dachel Media Review: Training Police, Social Skills

New to Autism Diagnosis - Follow the Yellow Brick Road

Autism SOSBy 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 Welsher TannerTim 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).

Favorite tweet…
“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”



Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

Michelle B

What I wish is that someone had told me to skip the stuff I spent thousands on: ABA, Speech, most DAN stuff.

What was helpful: Diflucan, casein removal, probiotics, melatonin, occupational therapy (if only for confidence building).

But what completely recovered my kid, and will recover yours, too: Andrew Cutler low-dose, frequent oral chelation. We did round after round, weekend after weekend. It took years, but the mercury removal little by little took my kid from 'moderate' to NT.

Roger Kulp

Taximom,that was the way my mother did it.She did it with me up until I started on the leucovorin,almost three years before she died.Autism with frequent regression without intellectual disability,can be as bad as autism with intellectual disability,because each regression wipes out a lot of what you have been taught,either at school or at home.The worst thing a parent can do for a child with severe autism is to put them in a group home as an adult,while the parents are still alive.

Jeannette Bishop

@Rosycurler:

I can't make recommendations with much firsthand experience but these are other organizations I am aware of:

http://www.autismone.org/
http://www.autism.com/
http://www.autismmediachannel.com/
http://nationalautismassociation.org/
https://www.tacanow.org/

cia parker

Rosycurler,
Thinkingmomsrevolution.com, regardingcaroline.com, the TACA (Talk About Curing Autism) website and the TACA book for parents of kids with autism, filled with articles and advice on many subjects. Diet: pecanbread.com is very good, with lots of articles and recipes for the grain-free, dairy-free diet that has helped my daughter and many more.

Rosycurler

Help needed. I have received the following message from Geneva, Switzerland:

“The son of one of my colleagues is autistic. Which links do you suggest I should send her. She needs to learn about other strategies for her kid.”

All suggestions would be most helpful. Generation Rescue, Age of Autism, Others ? I myself have no experience with autism.

I thank you in advance for all your suggestions.

BTW since 2013 vaccine makers enjoy blanket immunity for vaccines put into the stream of commerce in Switzerland. Pre-exculpated from liability, vaccine makers henceforth can kill and maim with impunity in Switzerland. The value of human life has been capped at a ceiling of CHF 70 000 (USD 79 000) for clear vaccine-induced death. Pay outs to come out of public coffers, that is tax payers.

Taximom5

@Cia Parker:
"She needed to be taught English as though she were a foreign student who had never studied it, yet from the beginning, it has been assumed that she could use high-level vocabulary and structures, when she was completely unable to do so."

YES.

I always said that teaching my autistic son to communicate was like teaching someone from Mars how we do things here on earth.

Everything, not just speech, but actions, had to be taught from the beginning. I explained every step, not just what to do, but WHY. For some reason, he never asked the typical toddler "why" questions. Nobody seemed concerned about this, but I was, so every time I thought he should ask why, *I* asked *him* why--and then answered for him.

I taught him all these things like they are rules (in many ways, they are), and so I also taught him every exception to the rule that I could think of--and WHY there were exceptions.

And he got it! He understood, and he filed away every explanation and answer in that incredible memory of his, and he never forgot any of them.

Do any of the professional autism "experts" ever even consider this?

Aussie Dad

My Springsteen music helps. As I read Tim's article I had the Magic album on and 'Last to Die' playing. I recommend autism parents listen closely to the words. http://www.youtube.com/watch?v=HYnDXSbrHa4

Jenna

Move to New Jersey or California. You will need to fight hard for services in those places too, the difference being that in the end you will actually get them.

cia parker

Beverley,
Besides that, SS Disability is reduced if the autistic person earns over a certain amount a month, they reduce it by one dollar for every two dollars earned, I think. And the amount isn't enough to live on, maybe six hundred dollars? And they're making it harder and harder to qualify for disability, since the numbers of the autistic are spiraling out of control. I don't know what's going to happen once the parents start dying. Here our county case manager has said there are no plans at his agency for how to care for our burgeoning autism population when this occurs, as, of course, it will.

cia parker

I'm only speaking for my one person with autism, my daughter. The speech therapy she has been given for the last eight years has been worthless. She needed to be taught English as though she were a foreign student who had never studied it, yet from the beginning, it has been assumed that she could use high-level vocabulary and structures, when she was completely unable to do so. And yet the therapists had no alternative plan, and just forged ahead with beginning, middle, and end, or conversational strategies for chatting with someone you've just met. Just imagine if you were going to spend the next twenty years in Bangkok, and you were expected to learn Thai from total immersion. Being instructed in the social niceties of showing respect and interest would be of no use to someone who can't even say "I saw a dog that was sniffing a tree" in any language.
If I had it to do over again, I'd get the Cambridge University ESL books for teaching English to young children from the earliest age, and work with my daughter using them every single day and then put the things studied into practice in everyday life. Parents will have to do that themselves, the concept is just too complex for our society's specialists at this time.

Beverly Chase

I am not sure how to connect with the poster above, Vicki Hill. Although I agree with much of the article, I am facinated, or maybe shocked would be a better word, that housing dollars might be measured by one's IQ. What an unfair, antiquated way to allocate funding. It says to parent's... don't work too hard to "recover" your child, or else you will be financially supporting them all of their lives. Persons on the spectrum (and without for that matter)are not measured well by our current models of IQ testing. Frankly, it isn't the population being tested, it is the limitations of understanding (yet) of the test writers/scientists. An IQ only gives you a "possible" range, but the testing is 100% dependent on test taker participation. Give anyone a test while they are at a status 10 alert for an anxiety attack and they will fail to paint a FULL picture of their intelligence. Add in limited, or inability to fully communicate in verbal, written, or ? and it is a joke to think we get anywhere near a persons true intelligence level or potential. Intelligence is not measured by testing methods. Intelligence is acquired, demonstrated and observed (or in far too many cases, not). Rant over. Please contact me Vicki Hill. I would love to know more about this.

Vicki Hill

My only disagreement would be with your comment about the unchartered waters of adults with autism. There are people blazing the trails for adults with autism. However, parents should not expect to wait until their child turns 18 to look into these, get involved and advocate for more services for adults with autism.

The federal and state-by-state rules governing adults with disabilities were generally written before the autism epidemic. Some of the rules work for autism, but others do not. For example, here in Texas, housing supports are for those with an IQ of 69 and below, or a combo of autism and an IQ of 74 and below. But if you have an IQ of 76, you will never receive one dime for housing, no matter how much your autism and comorbid disorders get in the way of you becoming self-supporting.

We need more squeaky wheels. We need to let legislators know that the tsunami is fast approaching.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)