Autism or Bust: Why a Diagnosis Matters
Our trip the Children’s Autism Center was a complete bust.
Mordecai has been on the waiting list to be seen for fourteen months. He had a screening appointment back in April where I was told by the nurse practitioner that there were enough “red flags” to warrant a full autism evaluation. I was also told there was a waiting list and he would probably have been seen by October. Last week a friend posted online that her daughter, who was screened after Mordecai, had an appointment for her evaluation on January 5th. I immediately called to see how close he was getting to an appointment and was told: “he’s on the waiting list”.
“I know he’s on the list, I want to know how long it is going to be before his appointment,” I said.
Keep in mind, Children’s only opens its calendar three months in advance, so usually when they call to schedule, the appointment is three months out.
“How about January 5th?”
Of course, I took the appointment. But what the heck?! After waiting fourteen months (and eight months past his screening) I call and they give me an appointment for the next week? On the same day as my friend’s daughter? Were they ever going to call me? I’m actually not sure they were.
We left the house at 6 am to drive 100 miles, in nasty Seattle morning traffic (it took 45 minutes to drive the last 10 miles!)
When we were taken back to Mordecai’s appointment he was handed an iPad to play while I sat and talked with the psychologist for an hour and a half. She asked Mordecai two questions: What grade are you in? Do you ever have thoughts of hurting yourself? He missed a day of school for what was, not an autism evaluation, but yet another screening (where I, not Mordecai, talked to the doctor). He didn’t even need to be present, from what I could see. We went over exactly what I covered with the nurse practitioner in April.
I heard repeatedly, “we don’t usually test kids with FASD for autism because there is so much overlap in behavior”.
Then why did I just wait fourteen months for this appointment? And eight months past a screening when they knew full well he has FASD?
The other catch phrase of the day was, “It doesn’t matter if he has autism or not. When we do therapy we target the behavior, not the cause. So either way, he will be getting the same treatment”.
Except he won’t, because without an autism diagnosis, there are services he doesn’t qualify for and cannot access. For instance, his IQ is low enough to qualify him for DDA…if he has autism, but not if he “just” has FASD. Our local chapter of FACES is only open to people with an autism diagnosis. There are zero resources in our area for kids with FASD.
Zero.
In the end, she decided to go ahead with the evaluation later this month. But not before she canceled one of his upcoming appointments…and then said, “Okay, bring him in on February 8th…I am going to try to expedite his appointment with so-and-so…oh, and he needs to see a neurodevelopemental specialist, but the wait for that is three to four months“. Total disregard for my schedule (Um, I do have other kids at home). I get it. She’s busy, the clinic is busy, everyone is busy. But so am I. I rearrange my entire life around appointments to this hospital and they think nothing of canceling and rescheduling my appointments.
I know, I sound selfish and ungrateful. I’m not. I’m just frustrated and fed up. Exhausted and tired. And if I’m completely honest, hopeless and discouraged.
I wish I could give you a hug and buy you a coffee at Starbucks. What an awful situation.
Nope…not selfish and ungrateful. That place is getting huge bucks to provide a service to you and should be treating you as a valued customer. I know health care isn’t like food service, but still, without patients they are nothing.
The “a diagnosis doesn’t matter, because we treat the behaviour” sentiment makes me cringe. It’s like saying it doesn’t matter whether you have an aneurism or brain cancer, because we just treat the headache.
I feel your pain. I will pray for you. I too wait for months for my child’s appointments with specialists. I live four hours away from any major children’s hospital. The wait is hard. The appointments are hard. Hang tuff Renee and know that ?YOU are Mordecai’s only TRUE ADVOCATE. I believe in you!
Sending you prayers for peace and comfort and for someone to get their act together to help this child! Very disheartening.
You don’t sound selfish and ungrateful at all. I feel burning mad just reading this story! I’m so sorry that your efforts to advocate for your son are thwarted by our broken medical system. You have probably already looked into this–have you checked out the Sendan Center in Bellingham? Really, really cool place with the goal of supporting the child with special needs AND the whole family. I do not know what they would have available for Mordecai, but I do hope they have something!
There are a few issues with the Senden Center. Last time I talked to them Dr. H wasn’t taking new patients and their waiting lists was 18 months long. Also, they don’t take Mordecai’s insurance which is provided by the state through Adoption Support. 12 years ago they promised to cover his “medical care and mental heath care” when we signed the adoption support contract. Unfortunately, the psychiatrists around here don’t take the insurance offered by the state, something we were unaware of. Also, they won’t do autism therapy without an autism diagnosis.
Your feelings and frustrations are so justified! I will pray.
I wonder if there’s some way around this clinic and these wait lists. Lawyers–very good ones–do pro bono work sometimes. I bet autism specialists do, too. I would find out who the good ones are–or write to some prominent pediatrician and explain what you want. Perri Klass comes to mind. I bet she’d be someone with good advice.
I honestly don’t think so. The waitlists are so long, and the reality is the better insurance (or more money) you have means shorter wait times.
We went through this with our oldest who had significant features of autism when he came home to us at age 2yrs. He was still in the system at the time, so we were not allowed to get therapies without a diagnosis. We were paying out of pocket for ‘illicit’ occupational and speech therapies, because he needed them desperately. We finally found a sympathetic neurologist who gave us the diagnosis at age 4yrs. Soon after, his social worker called to say that he needed to be evaluated for FASD, because his older birth siblings had just been diagnosed! Of course we were told by his neurologist not to even bother with the fasd label, because it may actually impact negatively the services he will qualify for as an adult (fewer available for fasd). We had no idea (and neither did the workers in the system who were charged with helping him). I feel your pain and frustration! It takes me right back to our struggles.
Thank you for that info. That is absolutely ridiculous, though! If any of these doctors or insurance companies cared to read how many people with FASD end up incarcerated…they might pay more attention now. Right now we have a 13 year old in a supportive home, unable to get the help he desperately needs.
How about we try to get him help now, and not wait until he is 18 and living outside of our home?
94% of individuals with an FASD also have a mental illness [1] 50% of adolescents and adults displayed inappropriate sexual behavior [2] 60% of people with an FASD have a history of trouble with the law [3] 50% of individuals with an FASD have a history of confinement in a jail, prison, residential drug treatment facility, or psychiatric hospital [4] 73-80% of children with full-blown FAS are in foster or adoptive placement [5] FASD is 10-15 times more prevalent in the foster care system than in the general population.[6] 61% of adolescents with an FASD experienced significant school disruptions[7] – See more at: http://www.mofas.org/2014/05/fasd-and-the-criminal-justice-system/#sthash.GSXcFVXm.dpuf
I am so sorry! This is so incredibly frustrating! I have kiddo who was diagnosed with Autism at 7. It was a long complicated road, but nothing like what you are experiencing!! I am just throwing this out there, but feel free to disregard. We go to an amazing psychiatrist in Tacoma at Mary Bridge Children’s Hospital, Dr. Ken Wang. I know it would be a trek for you and I have no idea if he would be covered by the state’s insurance. He was the 3rd psychiatrist my son saw and we have now been with him 3.5 years. He is compassionate and knowledgeable. Again, delete this info form your memory if the suggestions causes you more stress! Prayers of strength and encouragement for you!!
Generally, with the state insurance, we can only go to the doctors in our region 🙁 And if there are none, well, we’re kind of out of luck. If we could move to Seattle at this point, we would. We could get better evaluations for Mordecai and Apollo would be close to his doctors as well.
You do not sound the least bit selfish or ungrateful. You sound like a weary, discouraged, desperate parent (*I* feel incredibly frustrated and desperate when I read this…I can’t fathom what it must be for you). You are ever-present in my thoughts with all that you are shouldering.
Thank you 🙂
I am a regular reader, and fellow adoptive parent formerly from the PNW. Our daughter has different diagnoses, one of which we were able to acquire at public expense through an Independent Educational Evaluation (IEE). You may already know this (you know, because parents always memorize the small print of their safeguards and rights!), but you have a legal right to ask your school district for an IEE if you disagree with the results of his last IEP psycho-educational evaluation (Washington State legal rights can be found here: http://www.k12.wa.us/SpecialEd/Families/Evaluations.aspx). When you request an IEE at public expense, the district has only two choices: 1) pay for the IEE; or 2) take you through due process which is more expensive than an IEE. So long as the psychologist you choose is qualified by SELPA standards, you get to choose your own evaluator. The school also only has very limited time frame (a couple of months?) to have the IEE done and paid for. Perhaps this might be a way to get a private neuro-psychologist in your area to do the autism eval at public expense (if the school’s last eval missed this diagnosis), as well as have the psychologist attend the follow-up IEP meeting one your child’s behalf.
Hmmm…he has been tested and has an IEP, but as far as I understand it, the schools do *not* test or diagnose for autism (referring to your comment, “if the school’s last eval missed this diagnosis). I will look into those links more. Thank you.
Oh for crying out loud! I am furious on your behalf. Too many professionals can’t wrap their brains around the concept of a complex diagnosis and needing the label to get the assistance. Praying for light at the end of the tunnel (that isn’t a train)
I know. It’s not like I’m upset at the doctor (I *am* irritated at the rescheduling of my appointments….I have a busy life and home) she’s just doing her job, but this is ridiculous. I am most upset at the state that agreed (in a signed contract) to cover his medical and mental health needs.
To get our son evaluated we went through a clinical psychiatrist for children. I then ended up getting my son onto blue cross /blue shield because to many doors were closed to state only. What you really want to pursue after the diagnose is ABA therapy. 🙂
See, this is where it is complicated. We keep running into one of two issues. Either Adoption Support won’t pay for him to see a psychiatrist, or the psychiatrist won’t take his insurance. Either way is the same result: he literally cannot see a psychiatrist! We are adding our insurance to his adoption support this year, but we are still facing 12-18 month waiting lists.
That’s horrible to hear! Really inconsiderate not only to you but to Mordecai. You don’t sound ungrateful at all. You pay to see a professional so you should expect professional care and consultation.. I’m at university preparing for work in health services and I’m going to make it a goal to not do things like this no matter how “busy” things are