8 month waiting list. 3 hour appointment.
Expert Medical advice: no electronics before bed, give him massages, find a sport he likes.
I’m in a bad mood.
Please allow me to introduce you to the author of these words. Bacon and Juiceboxes: Our Life With Autism is a Facebook page chronicling one family’s experience of life on the spectrum. They are honest, funny, real, and passionate about advocating for their son (and all of our kids). When I saw the post about their most recent doctor’s visit, I asked Mr. and Mrs. Bacon if I could share their real life here.
Because this experience is one that most of us with children on the spectrum, have had at one point or another.
Because the further we get from diagnosis and the older our children become, the less likely we are to find medical attention when we need it.
Because I have to believe we can do better.
“The Specialist” – a written reflection by Mrs. Bacon on our ‘not so helpful’ visit to the doctor last week.
It’s been almost 9 years since we received a diagnosis. We have tried lots of different treatments to lessen the burden of some of Eric’s symptoms. Most have been focused around GI and feeding issues, speech and OT deficits and a touch of OCD. Over the past couple of years, 3 new symptoms have grown some roots: anxiety, aggression and insomnia!
After realizing we cannot be exhausted for the rest of our lives, I did some research to see if I could find a specialist that could help. We are lucky to be within driving distance of several world class institutions. I came across one that sounded like the perfect place for us. They claimed to have an “integrated care program” for patients with autism and employed physician specialists, nurses, psychologists, psychiatrists, occupational therapists, speech-language pathologists and more.
When I called for an appointment, I was told it would be 12-18 month wait. Resisting the urge to hang up, I bit my lip and said “OK, sign me up.” I figured time was going to pass by anyway, so why not? When I was asked the question, ‘why do you want to see the specialist?’ I broke down in tears. The scheduler was AMAZING, obviously has heard many tears from callers over the years. Told me to take my time, take a deep breath and she would be ready when I was. I got myself together and shared my worries and explained that Eric is getting bigger and we wanted to be sure we were doing what we could to manage these symptoms and ensure his happiness. She recommended I meet with a particular specialist that only had about an 8 month wait, and so with a few clicks of her keyboard, I was on the list. I was sent an “intake” packet and she said the clock would start ticking once they received everything back.
I went right to work gathering initial diagnosis paperwork, and at least 47 evaluations, assessments and reports done by various therapists and school personnel from the past 9 years. It took hours. I sealed up my envelope and mailed it away. Then waited…. Finally, got the call and appointment was scheduled. I was kicking myself for waiting 9 years; convinced that these specialists were–for sure–going to have some important advice and recommendations.
On the day of the appointment, I was a little apprehensive in the car and got a bit emotional. We told Eric we were going for “a meeting.” I didn’t want to say “doctor” since I didn’t want to raise his anxiety levels. He asked to “look see pictures of meeting.” So I googled the building and found an image to show him on the phone. He gripped that phone and looked out the window waiting to see that building come into sight. I know that Eric understands so much more than we probably realize. I talked to him and said we wanted to have a meeting to talk about why he won’t sleep and why he sometimes feels angry. I’m not sure if he understood, but I tried. The one thing I always worry about is wondering if Eric wants to ask us “Why do you keep bringing me to doctors? Aren’t I OK just the way I am?” I feel selfish that it’s more for US than for him. He may not realize the impact his daily anxiety and occasional aggression has on others; and he may not need sleep to function – but WE DO!! So we keep on driving….
Here are the realities, along with my misguided hopes:
Reality: We arrive, and the waiting area is pretty generic with the exception of a few computers and ipads that people can use while they wait.
Hope: I expected a room filled with sensory friendly pillows and toys.
Reality: We waited quite some time before they came to get us.
Hope: These people will understand Eric won’t be able to wait too long; most individuals with autism have problems waiting.
Reality: The first specialist we met, was nice enough; but asked so many questions and talked over us as if to answer her own questions.
Hope: I was looking forward to speaking with someone who “got it!” who has been through the trenches and would have a plan.
Reality: We were given behavioral modification suggestions to help align Eric with his “sun” clock.
Hope: After 5 years of no sleep, I desperately wanted someone to have a solution.
Reality: After 1 hour – (yes 1 hour) in a consultation room that contained a pathetic Tupperware container of mismatched and uninteresting small toys, I took Eric back out to the waiting room to play on the computers so that Daddy could talk to the nurse without Eric’s constant interruptions.
Hope: Thought for sure there would be some engaging toys, maybe some cool fiber optic lighting, a fish tank, bean bags and maybe a trampoline (ha! ok maybe not that one) to keep Eric happy and also allow the practitioner to observe him at the same time.
Reality: Daddy came back into the waiting room since she now needed to “talk to mom.” When she started asking me what kind of probiotics he was taking, I started to show my frustration. “Do you need that information AGAIN? I assumed you had access to the documentation that I prepared?” and she replied ‘oh is that in there?”…. Wrong Answer!
Hope: I spent no less than 5 hours finding papers, copying papers and compiling the phone-book-thick file for you. Humor me and pretend that you read it.
Reality: Again, we found ourselves in the waiting room, as we were now moving onto specialist #2. After 5, 10, 15 minutes later I asked at front desk about how much longer we would have to wait. This break in between specialists was not ideal, as once we left that room – Eric thought he was DONE. They said it should only be another 5 minutes.
Hope: Knowing this whole appointment was going to take 2-3 hours, and assuming they had done this once or twice before, I figured it would have been better coordinated and consideration given to the patient – who 1) has anxiety issues and 2) who hates to wait.
Reality: After waiting 20 minutes, Daddy took Eric to the car. I think Daddy was more frustrated at that point than Eric. When the two specialists came back out to the waiting room to get us – they looked quite perplexed to find only me. I promptly informed them that Daddy and Eric retreated to the car. As we walked back to the consultation room, I matter-of-factly asked: “Although I’m sure I already know the answer to this question, I really have to ask if you’ve ever worked with kids who have autism before??” They both looked at me with stunned silence and I continued “This format simply does not work.”
Hope: With such an incredibly high number of children (and adults) diagnosed with autism, there are now a multitude of specialists making a living treating our loved ones who, by now, collectively have years and years of experience. I would have thought that such an esteemed establishment would have been prepared with a PLAN and maybe a check list at our meeting that covered something like this:
1) Insomnia – ok let’s do this test, check for this and regroup and if that doesn’t work; we can then try this……
2) Anxiety – hhmm..based on the symptoms you have described, the most successful approach we have seen is….. (fill in the blank)
3) Etc etc…
Right down to the last minute, this appointment was a disappointment. After I was done listening to some rather superficial and not helpful advice, the appointment ended. I was asked by the nurse to give her 5 minutes to print out my report and she would meet me in the lobby downstairs to give it to me. After waiting 18 minutes, I went back upstairs to have the receptionist call her- only to have Daddy text me and say she just came outside to the car to find me. Instead of leaving the paperwork with Daddy, she brought it back inside – and by the time I came out to the car – she was gone. WTH?! I was SO frustrated! There was no way I was stepping foot back inside that building, so I started the car and drove away. [It is now 6 days later, I have never received a phone call, email or letter in mail with any sort of follow-up].
For the next 1 hour 45 minutes of traffic, I fought back tears of frustration knowing that we wasted so much time. 8 months for the date to come, 3 hours for the appointment and over 3 hours commuting to/from the amount. I silently wished that I had all the necessary credentials to open my own center. It is SO needed.
Once we finally allowed our blood pressure to return to normal, Daddy and I chatted over “breakfast for dinner” about some of the ridiculous recommendations.
He nailed it on the head when he said “they didn’t know what to do with us.” This center was really geared toward those families who were at the start of their journey, and either looking for a diagnosis or just receiving a diagnosis. They had a few basic things to recommend – but for families like ours who have been on this journey for a number of years – they had very little to offer.
The medical community needs to face the reality that small children diagnosed with autism grow up to be adults with autism.
So, just as there are recommendations and common therapies suggested for the little ones, there needs to be guidelines created that are directed toward adolescence and adulthood too.
I’m convinced that a parent-run center, or parent advisory committee could be more powerful and impactful in creating recommendations, guidelines, options or simply general advice that could be helpful for families across the entire width of the “ability and age” spectrum.
Maybe I have just found what to do for my “next” career.