Just Diagnosed with Autism, Now What?

Juicy-FruitWhen your child, likely as a toddler,  is diagnosed with autism, the moment stays etched in your brain forever.  In our case, we were 11 months past regression, in a neurologist’s office, where instead of saying the word autism, he wrote these three words on a prescription pad:  Autistic Regression Syndrome.  Which I know is now isn’t actually a real diagnosis.  He said this was something they were seeing these days, and no one knew why.  He said there had been anecdotal evidence that Intravenous Immunoglobulin (IVIG) might help, and maybe we could get our insurance to cover it, then sent us on our way with zero support or resources.

IVIGWe left that appointment in shock and numb.  It took a few weeks to even wrap my head around the diagnosis.  Both my husband and I cried many tears.

Probably soon after the diagnosis, your first round of Google has brought you here to the Thinking Moms’ Revolution.  We are so sorry you’re here, but stand ready to help you.

You have some choices to make.   You can choose the path that says your child has a behavior disorder and behavior therapy is your only option.  You can choose the path that says your child is physically ill, and you need to treat the physical symptoms.  Or you can choose some path that picks from both of those.

Probably because you are here, you already are choosing either option B or option C.

This is what you need to know.

First: find your people. Find a support group (tons of them on Facebook). Find a local mom  who has been through it. Find a Rescue Angel at Generation Rescue or a TACA mentor.  Someone who has gone through this process and is available as both a sounding board and shoulder to cry on.  I cannot emphasize enough how important this is.  You will, unless you are very blessed, lose the majority of your day-to-day friends.  They won’t be able to handle the intensity that is now your life.  Having someone who gets it is critical.

There are services available to you when you have a diagnosis of autism. Depending upon your state, it may take upwards of five years on a waiting list to get them. So call now and get that ball rolling.  You will be opening your life to a never-ending parade of paperwork and qualification meetings, but your baby deserves those services, and, unless you are very wealthy, you will need the help to pay for things.  While you’re at it,buy a large filing cabinet. You’re going to need it.  Get organized.  I carried a binder of all current tests and therapy evaluations to every appointment, garnering me the name “Binder Mom.”

Son RiseTherapy is important, but its not going to be successful unless your child can focus on it.  Spend some time addressing the physical stuff, the stuff causing pain, before you expect you expect your child to sit and work for a therapist. Depending upon your child’s particular issues, you will be looking for speech, occupational, physical, and/or behavior therapy.  The behavior therapy can come in many forms, and its up to you to find the one that fits your family the best.  Options include Applied Behavioral Analysis (ABA), Floortime, and Son-Rise.

I will never forget our first DAN appointment, coincidentally a few weeks after the aforementioned neurologist appointment.  It was a team appointment, with both the doctor and a nutritionist, and my son sort of draped himself over a stool and hung out. The nutritionist said, “Doctor, look. He’s posturing.”  I didn’t know until that point that his constant need for pressure on his stomach was actually a sign that he was hurting.  The pressure relieved his pain.

You  are the parent; you are in charge.  If there is something about a doctor or therapist that doesn’t sit right in your gut, you get to choose to not go back again.   The doctor works for you.  Not vice versa.  Do not allow a doctor to bully you.

There’ll be a lot of tests. A lot of money out if you choose to go that route.  Lots of blood draws and stool/urine collections.  You don’t have to go that route. You can choose to pick a treatment direction first.  One test I do recommend doing regularly is the Autism Treatment Evaluation Checklist (ATEC).  It will help you see how what you are doing is impacting your child’s symptoms.   If you don’t want to go the laboratory testing route, you can look at homeopathy or you can look at the CD protocol, or you can consider something else.  There are a lot of different — and effective — ways to attack this, and it is a matter of finding the right one for your child.

There will be a lot of things that don’t work.  This is because every child with autism is a little different, and there are very few models that work for every child.

You will probably feel guilty. You have to let that go. It doesn’t serve you OR your child.  Find a therapist if you need to, but don’t carry that burden. Its not yours. Forgive yourself so you can heal your baby.

If you can afford it, and can take the time away, consider an autism conference.  There are several on a national level each year that provide not only a ton of information, but also fellowship with a whole population of people who get it.  Autism One is coming up in May, and always has a week packed full of incredible information.

Once you are past the grief and the guilt, you will get angry.  This is normal.  Find a way to channel that anger into righteous indignation.  Tell your child’s story. Be their voice until they can tell the story themselves.

~ JuicyFruit

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4 Responses to Just Diagnosed with Autism, Now What?

  1. Joy says:

    I suggest look into chelation options. Some of the neurological effects COULD be attributed to metal exposure/absorption.

  2. AmyinIdaho says:

    Juicy Fruit – I’m curious….So the neurologist didn’t even give you a valid diagnosis? Did you have to go to another practitioner? I see this so often – people waiting for months to get in to see someone only to walk out with something that doesn’t even ‘exist’ in terms of diagnostic coding. It’s almost as if the doctors are afraid to use the code and to give the diagnosis.

    We got our dx from a developmental pediatrician (waited 6 months for the appointment) and while we were able to get something ‘valid’ from the appointment, he too was worthless as to what to do next. He did want to see us in 6 months though and my thought was WTF for? You haven’t given us any direction or any instruction or any guidance. So I come back in 6 months, you bill my insurance and we all walk away saying “yep, still autism!” ?!?!

  3. Vince says:

    Buying TACA’s “Journey Guide” was a real lifeline for us in the beginning. We had no clue about anything, and that was such a great overview. “There are things you can do, despite what our initial doctor told us, and here’s a thousand of them.” I still use their “Meat Puffs” recipe (slightly modified) pretty much every couple of weeks.

    Finding a DAN doctor was a big step. I love Son-Rise as well, Even if you don’t actually do the program, get the book & Rauns’ DVD “Breakthrough Strategies for Autism” – it will help no matter what therapies you choose.

  4. Jill Klink says:

    Perfect, JuicyFruit! Well said. Wish I had had this five years ago. OH, well. I’m here now and look so forward to reading the TMR blog everyday. Best last line ever…”Be their voice until they can tell the story themselves.” Yep. I can’t wait to have that conversation with him someday, even if he drops a few F-bombs. It’ll be music to my ears.

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