You probably think I'm talking about my boys, right? NOPE! They are perfect in every way, at least to me. But I am frustrated, it started as an annoyance, then a disturbance and now it is a full fledged frustration!
Why are there so many people, institutions and groups that say they are here to help and support the Autism Community yet they make it IMPOSSIBLE to receive that help and support????
If you are an Autism parent I'm sure you have read an article or received a recommendation to look into Intervention (I'm going to use that as a general, all encompassing term). You think, "Wow, that sounds amazing. Maybe this is what I've been looking for to help my son (daughter)." So you go online and hit the Googles to see where it takes you.
Website A says, "Serving the Autism community since 1997"
Website B says, "We are here for your and your child"
Website C says, "A comprehensive approach of mind, body and spirit to help (or CURE!) your child's Autism".
Depending on what you are looking for, I'm sure one of these sounds great! Since you've got time, right now, you pick up the phone and call immediately. After all, you want to help you child right now! Does your conversation sound something like this?
Me: HI! Your intervention was recommended to me by a friend (doctor, family, school), I've read your website and it sound like something we would like to try.
Intervention: Thanks for calling, we are here to help. Let me just get some information about your child and his diagnosis and we will get you scheduled right away!
Me: Great! (proceed to re-live your entire pregnancy, the birth of your child and every single step, utterance and skill gained in the first few years leading up to the diagnosis. Then go to to answer questions about his (her) current therapies, doctors, school, etc. But seriously you are a ROCK STAR MOM (DAD) because you know all this info, you don't need the baby book or contacts list... you've got this!)
Intervention: Lets get him (her) scheduled right away! Our initial consult is $500 not including lab fees which will run anywhere between $500-$1500. Follow up consultations will be $150 per hour and we will need to schedule your child for weekly visits to make adjustments until we are sure the Intervention is working completely. There is a $1500 deposit due at your first appointment and all other payments will need to be made at the time of your appointment.
Me: Wow, thats a lot. How do you handle insurance, we've got excellent coverage.
Intervention: We don't take any insurance. It is your responsibility to submit for reimbursement to your insurance company.
Me: Okay, do you have any idea from talking with other families about how much of this could potentially be covered?
(Because this person is extremely helpful, but that isn't always the case he/she answers)Intervention: Some of the lab work is covered, most insurance companies deny the claim the first and second time but occasionally I do hear of a parent who will get some portion of the follow-up visits covered under the mental health part of their policy.
Me: (being optimistic) Ok, I'm on a first name basis with Blue Cross Blue Shield anyway, I don't mind submitting the claim. But, hey, we also have the State Autism Waiver which specifically covers Autism treatments!
Intervention: We don't accept any waiver programs.
Me: Okay... We'll figure it out, how soon can my son be seen?
Intervention: Our current wait list is 6-8 months long. We can put you on the cancellation list although people rarely ever cancel.
Me: (Thinking: Of course not, after waiting 6-8 months, who would cancel?) And how is it that you want to HELP the Autism community? You don't take insurance, you have a wait list so long that we will have different issues by the time we are actually seen and you make it all but impossible to actually receive HELP??
Alright... I don't actually SAY that last part, BUT I WANT TO!!! Stupid manners and my inability to forget them sometimes!
Here's my point... I WANT to help my kids! I'm a researcher at heart and I've read so much about all the different ways I can do that, but at some point there comes a time where I have to realize that I'm not a doctor, neurologist, teacher specialist, naturopath, and to go further I have to consult someone who is supposed to know what I don't. If you are really, truly in the business of helping the special needs community then why wouldn't you set up your business in such a way that we can access the help. Why does Every. Single. Step in our attempt to help our children have to be so damned difficult?
I've only recently changed my thinking from, "I need to prepare the world for my child" to I need to prepare my child for the world. It is up to me to prepare them to deal with difficult situations, I cannot assume that every person on the planet is going to be understanding of their quirks and needs. I cannot assume that someone will be able to look at my child and know that he is having an "Autism moment" and that he just needs a little time and space. (Insert mommy freak out about police and other authority figures who have mis-interpreted Autism behavior as aggressive and the horrible outcome of those instances. Remind me to stop reading the news)
In my research, I've decided that my focus will be on Education, Neurology, RDI, NeuroFeedback and Clean Eating. In each and every one of these I have run into a brick wall in some degree or another:
Education: The high functioning special needs community is the least served community in the education system. If my child couldn't talk, we have an excellent program. Anything more than that, forget his needs, we will accommodate him in inclusion where he won't fit in and could be mocked and teased for his typical ASD behaviors. Lets forget all about his own community of peers that would understand and accept him more easily, they are scattered through out the county in other schools' inclusion classes.
RDI: There is something about RDI that "speaks" to me. It could be that it is parent implemented or that it allows for the re-teaching of skills missed at younger ages but there is something about the basis of the intervention that has me going back to it again and again. RDI is not covered under insurance and is even less known than ABA (although the current revised version of ABA sounds an awful lot like RDI). What is RDI?
Neurology: Autism is a brain disorder, current mapping shows scattered neural connections in most ASD brains. Most ASD brains are larger than average. Seizures are a common secondary issue. But your child doesn't have seizures. You don't need a neurologist so it's not always covered by insurance and most neurologists won't see you based on "My kid has Autism".
NeuroFeedback: "This treatment is classified as experimental, no accepted studies have proved this to be a successful intervention"says, Insurance Company. NeuroFeedback is a qualifiable, data driven intervention that uses your child's actual brain waves to "see" inactivity and then complete exercises that creates new or strengthens neural pathways. It sounds like a really great intervention for ASD, ADHD and Anxiety to me. What is NeuroFeedback? Side note: I did BioFeedback last year to see if it was something I thought an ASD child could do as a means of reducing anxiety. Shockingly enough BioFeedback was covered under my insurance (Isn't it "experimental"? YES) but I do not think an ASD child (especially with ADHD) could do BioFeedback. In my opinion BioFeedback requires an Active Participant though breathing and imagery whereas NeuroFeedback can be completed with a Passive Participant through games.
Clean Eating: No diet, no plan, no intervention, no elimination, just eat real food, as close to its natural state and without any junk added. This is just something that I want to do for our family and for myself and it's hard. I have zero time to cook from scratch, the boys don't always love my replacements to their favorite foods and sometimes fast, junk food is easier. It's not all the time, we do what we can, when we can.
Thats my rant today, I love my boys, I love their quirks and I'm in no way trying to change who they are or "cure" them. I just want them to be open and available to receive the education that could be their chance at independence (or close to it). I want them to have every opportunity and to get them there, I just want the chance to access interventions by professionals who claim they want to help the Autism community but don't actually make it possible for many families. To be quite frank, this is an issue that reaches outside the medical field and encompasses Intervention in many forms, educations, insurance, future planning, therapies, skills training and community.
Manners be damned, next time someone tells me, "there is help out there for your ASD child." I'm going to say,
Thats great! I can't wait to see what hoops I will have to jump through this time!