Autism Evaluation: Who Needs It?

posted in: Large Family, Special Needs | 32

And I really hope you could read the snark in that title. If not, you either

a) have not been reading here long enough or

b) need to change the battery in your Snark-o-Meter.

Autism Evaluation Timeline:

Referral: October 2014

Initial Visit and screening with nurse:  April 2015

We talked and I gave her a medical and developmental history. 

Second Visit: January 2016

This visit was just: talking, answering questions and giving the doctor his medical history. Yes, exactly what I did back in April, 2015 with a nurse. Mordecai was given an iPad to use and played it the whole time. 

Third Visit (cancelled) and language evaluationJanuary 2016

This visit was cancelled due to a medical emergency for the doctor..but I was already halfway to Seattle when they called.  We kept driving because my son also had a language evaluation with a Speech Language Pathologist. I was told it would take “about a week” to score the tests and I would be mailed a copy “in about two weeks”. It is now six weeks later, and I have heard or seen nothing. Not only that, the SLP has not sent the records to the autism center yet either. 

Fourth Visit (today) still no autism evaluation:  March 2016 

Today’s visit was nothing but questions, again. My son wouldn’t talk to the doctor (hello, he’s here for an autism eval) so I answered (and asked) questions for well over an hour. She asked if anyone had mentioned bipolar before and I said, “yes, but no one has wanted to pursue it because of his age“.

Well, I think he is old enough and I think it needs to be pursued“.

Okay. Fine. 

The doctor today told me the visit was “to discuss his strengths and weaknesses and talk about resources“. Umm….then why do people keep telling me he is going to be evaluated for autism? She knew I was not a Happy Mom. She asked if I brought his current IEP….um, no. I totally could have, but no one asked me to…plus I signed releases for sharing the information at our visit on January 5th. Seriously? This is 2016, everything is electronic, and still, three months later, the school hasn’t shared the information? Then why am I wasting my time driving back and forth? Mordecai just missed another entire school day to sit on a couch and play while I talked to a doctor. 

I asked her straight up, “So, do you not evaluate kids who have been exposed to drugs and alcohol?

Oh, we do” she assured me. “When it’s warranted.”

And she left it at that.

Chuck had to take the day off because Apollo is sick and my gut told me not to leave his teenage siblings in charge for the whole day when he has a persistent cough and fever. Chuck took him to the doctor and found out he has the beginnings of pneumonia; thankfully caught early and being treated with antibiotics now.

Fifth Visit scheduled for later this month: March 2016

Don’t even ask me if they are going to evaluate him then. I have no idea. In fact, I’m thinking of calling to ask if he even needs to be there. He already misses one morning a week to see a counselor who “has no idea” how to help. This will make two full days this month as well, for…what?

I am supposed to send in a copy of his rejected DDA application and fill out two more questionnaires. In addition to the one I filled out at the appointment today. Why? Why are they so ridiculously inefficient? Am I supposed to believe it never occurred to a single person to have me fill these out before??? 

She also mentioned a couple of new referrals to new doctors at Children’s. When I pointed out the ridiculous waiting lists she said, “I know“. 

So there you have it. This is real life, my friends. Seventeen months of waiting, and we aren’t even to the evaluation part yet. Everything I have done so far in four visits, could have been done in one. Seventeen months, he hasn’t been evaluated yet, and even if he does get the Magical Autism Diagnosis, he will then be added to more waiting lists for therapy.

I cannot even tell you how discouraged I am.

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32 Responses

  1. Alas, a typical experience. Now is the time to take matters into your own hands. I can suggest two possibilities, but no guarantees:
    (1) Do you know “somebody”–a state senator, an important writer, a diplomat, a lawyer whose name is a household word–or do you know somebody who knows somebody?
    A friend landed in a dreadful custody situation in which her husband–who kept their children’s passports in his breast pocket, even his pajama pocket–refused to release them to custody of their mother. He lived in Foreign Country X, which had no extradition treaty with the U.S.
    Eventually she got the kids–not through the legal routes, which involved contortions like the ones you describe above. A classmate of ours had a brother who KNEW SOMEBODY.
    (2) Get in touch with somebody who worked with or studied with Oliver Sacks, and who has that kind of perception and ability to look at the personality of the child–not the six or ten symptoms the kid is supposed to have had for a particular duration of time. In other words, get in touch with a person who will take a real interest in looking at your kid, and don’t take no for an answer. Phone them, or their secretary, until they hate you.
    While you are waiting, read, if you have not already done so, Clara Claiborne Parks’ THE SIEGE and EXITING NIRVANA, about life with her autistic daughter. Useful information, useful how-to.

  2. Oh Renee. How very discouraging! I am so sorry!

  3. ((hugs)). I know this doesn’t help much and you don’t even know me (I came across your blog as I was looking for blogs about families for the child development class I teach), but sometimes you can just use a ((hug)).

  4. When we had my son evaluated we went once, to a psychiatrist. They evaluated him that day. Maybe you would be able to pay out of pocket to get the diagnose. Once you have it you have a lot more pushing power. Also, maybe you should interview 3 councilors until you find a good fit? My son does Occupational therapy, emotion regulation, play therapy, and physical therapy to cover all the gaps I cant. There are autsim support groups, which are wonderfully helpful for finding good matches for your kid. Just giving you a list that might help M more, with a few ideas. :).

    • bakersdozenandapolloxiv

      We are fighting insurance at every step. He has seen a psychiatrist 4 times. Didn’t say a word to her. She “diagnosed” him with depression and suggested meds. End of story. She did no evaluations, tests, etc.

  5. ssmazzon

    Does the children’s hospital have a department called Advocate? I have used a parent advocate to get information fast tracked from Minneapolis CHildren’s hospital ( after an 11 month wait). I think you could use a third party fighting for you and Mordecai. I am not sure what is available in Washington. ( So Sorry!)

    • bakersdozenandapolloxiv

      I have no idea…I think they think they are helping…

  6. Michele@ Family, Faith and Fridays

    How very discouraging Renee! I pray you get answers soon and can find someone who can listen AND take action to get him the help and support he needs! In the meantime, you may want to tell them that YOU now need an evaluation for the strong tenancies you have to want to strangle everyone in those worthless offices! 😉

  7. alisonfrancesmcknight

    I share your frustration. It’s no better here in England, which is why it took til Henry was 18 to get a diagnosis – and that was eventually without assessment, just moving into adult services and the ‘shrink’ spent a few minutes listening to history and added Autism to his list. Big hugs to you all and incidentally, I second you on not taking Mordecai along and wasting his time and energy xxx

    • bakersdozenandapolloxiv

      Yes, the whole thing is so weird. It really makes me think I am barking up the wrong tree.

  8. http://vitalkidsmedicine.com/autism/
    This place in Seattle has a different take on Autism, but it’s worked for my son and they’re “real” doctors — they take insurance, and they’re certified to diagnose autism. They’re specialists, and they’ve been almost miraculous for some kids I know. And they have a much shorter waiting list.

    • bakersdozenandapolloxiv

      I know it’s terrible, but I am so exhausted from this fight, I can’t face the idea of starting over…not today anyway.

  9. Elizabeth

    Sorry for you and your son! I know you need a vent, and this might not be helpful. So please take or leave this as appropriate to your situation. Have you shown this center the bullet point stats and timeline you shared in this post? I know these things can be a process, but surely that length of time is not normal. If there is major miscommunication going on they may not realize how little they’ve done over such a long time.

  10. Oh Renee 🙁 the flipping system! It’s bad enough over here in Australia and I have to say we have it ten times better. Here’s some ideas that may or may not help.

    At your next visit take a timeline like you wrote here and hand it to the professional you’re working with along with a list of questions you want answers to. Smile politely and say you are eager for answers to your questions and for any tips on streamlining this process as it is very disruptive and getting things done is in the best interests of your child and your family.

    Ask “If there are any questions that we don’t manage to get answers to today, am I best to email them to the director of this facility, your patient liason coordinator or a different person? I realise you are all trying to just do your job and I would love to give some feedback about our experiences so the process can be improved.” then smile politely, showing a few more teeth than you actually need to and (if it’s not totally over the top) a little bit more of the whites of your eyes.

    Have a folder with every darn bit of paper you have ever gotten with Mordecai’s name on it sorted into medical, mental health, adoption etc If they ask for a piece of paper you do not have, say “OH, hang on I will call and ask X organisation to email or fax you a copy. We can chat while I’m on hold. If we finish before I get through I’ll just wait in the waiting room while it get’s sorted out.”

    At every step ooze “You are awesome at your job so you and I are going to beat the system for my kid…….or I may snap and make a scene that ends up with you being the scape goat that gets fired…..either way at this point” and any time they shrug their shoulders about the system, say “Well, it’s so unfair that you are unable to help us here. Can I have the contact details of the director of this program and the complaints department so I can give some feedback? The more of us families that make noise, the more likely it is to change. How do I spell your last name again? I’ll let them know how hard you’re working to help us and what you’re up against.” then whites of eyes, teeth and perhaps a little nervous twitch. Whatever your politics it may be a good idea to let a NRA pamphlet slip out of your bag at this point (sorry, that was probably in poor taste).

    If all else fails, cry. I hate doing this and consider it to be the nuclear option as I ugly cry LIKE NO OTHER. I’ve only used it a few times. Once after I stalked a GI doc through the hospital, then when he called me on my mobile (from the next floor of the hospital) to refuse to see me I went down to the ER and cried until the Director of the ER came in to hand me tissues and whisper advice on how to work the system before going up and making the GI doctor come down and talk to me.

    One thing the ER director told me is ask to see the consultant (head of department may be the US equivalent?) because they DO care and they DO know their stuff. If you aren’t happy, go up the chain. If they try and stop you politely remind them that they are not the boss and you have the right to ask and let them know you are aware of the complaints procedure of the hospital (check the website).

    My motto for this year: “Just keep swimming”
    My Jesus be your floaties <3

    • You.are.good. I am keeping notes for the next time I need it!

    • Oh wow – you’re good. Talk about taking it to expert level.

      Country Aus is not so great for waiting lists. I waited on an OT list for my son for about 3 years before we moved – never came up on it.
      We also waited for 1 year for a paed appt for an Aspergers assessment only for her to say to us “I could tell as soon as he walked in the door he didn’t have aspergers”. Really – like some kind of wizard doctor? No wonder it took so long to get into her with those amazing assessment skills.

      • bakersdozenandapolloxiv

        Oh, this drives me CRAZY! You have waited a year, and the doctor doesn’t even feel the need to do an actual evaluation? We run into this with Apollo at times. We drive two hours for an appointment, and he balks at getting his blood pressure taken or some other test, and they say, “Oh, well we’ll just skip that for today”. Um…we are driving 200 miles round trip, carving an entire DAY out for this visit, lets do everything, okay???

      • Launceston, Tasmania is the place to be weirdly. My daughter is seen by an amazing multidisciplinary team at an institution put together by the Launceston public after devastating polio epidemic at the start of last century. It gets government funding but the city also raises a lot of money and it operates on donations a lot It also helps if you spend the first 2 months of life in and out of the top pediatric ICU in OZ and have a “tick the box” genetic diagnosis as well as a complex heart condition. A blue baby opens many doors. A 4 year old who is non-verbal, tube fed, not walking yet and has more diagnosis than you can poke a stick at also opens doors and gets maximum funding but I still have a fight sometimes.

    • bakersdozenandapolloxiv

      Oh Jess, these are brilliant ideas! Thank you so much for taking the time to type it all out. I will take a timeline next time, a list of “demands” and a big, scary smile.
      And thank you for making my day.

  11. Stephanie Mazzon

    Crying has worked for me. I hate to use it. Have only cried twice in fourteen years…. But I too have to manage schedules and red tape and Childrens hospitals when I live five hours away ONE WAY.

    These are all GREAT suggestions. I use three ring binders. I take them with me to EVERY appointment.

    • bakersdozenandapolloxiv

      I always take notes at our appointments. I think it makes the providers uncomfortable. Oh well. Our primary doctor once told me (in regard to Apollo), “You seem so calm when you come in here. You aren’t crying or yelling at me, so I assume things are going okay.” This was before his diagnosis when I had a terribly sick baby who was starving before my very eyes.

  12. I am so sorry you are going through this but I thank you for sharing your struggle.
    I am an SLP that works in a different state. While I don’t diagnose beyond identifying a speech/language deficit/delay, I found myself getting hung up on wanting my clients to get an “exact” diagnosis. Since I work in primarily in early intervention, most of my clients are undiagnosed, which is okay at their age/stage because they are usually referred through the state program and are therefore getting the services they need. However, I was finding myself speaking with service coordinators, saying “they display characteristics of autism, but given their history maybe we need to consider that it is actually x,y, or z.” I thank you for sharing your struggles to get the ASD diagnosis for your son because it has helped me realize that while every child is more than just their diagnosis, sometimes a label is needed to get the services that child needs to succeed. It made me look around and realize that there are more resources available for those with an ASD diagnosis. I think sometimes medical professionals are warned so much about over-diagnosing that they are hesitant to give a diagnosis.
    So thank you for bringing awareness to the struggle from the family-side. It has changed the way that I approach the issue in my work. It is a shame to know that process seems to be so lengthy and time consuming everywhere (in my state, most places that specialize in diagnosing autism won’t even consider a kid until turn a certain age and once they hit that age they are put on a very long waiting list).
    I would definitely try to contact them before the appointment and find out what is the plan for the appointment and ask about what the overall plan is (which I am sure you have already done multiple times). Presenting the timeline doesn’t hurt either so they can see how ridiculous the whole process is.

    I am sorry for your struggles but thank you for sharing your story as I think it has helped make me a better speech therapist/advocate for my clients.

    • bakersdozenandapolloxiv

      Thank YOU so much for sharing this. It in no way makes up for what we are going through, but it does comfort me know that it is making you a better SLP. I went around and around with the doctor in January over this. She kept saying, “the diagnosis doesn’t make a difference, we recommend the same therapies” not understanding it makes ALL the difference, because he doesn’t qualify for those therapies. Insurance companies won’t pay for them, and providers don’t want to add him to the waiting list since he “doesn’t have autism”. Sitting at her desk, in an office, she can make all of the recommendations she wants, none of that gets him actual therapy! I don’t care if he does or does not fall on the autism spectrum. It doesn’t change how he acts or what behaviors we are dealing with…but it would qualify him for the Department of Disability and open doors to actual therapy and even summer programs.

  13. Wow! My daughter searched for autism symptoms on Google and was able to get my 3 1/2 year old grandson diagnosed with Autism, Bi-Polar Disorder, ODD, and ADD during a 45 minute tele-conference with a psychiatrist who put him on extremely high doses of Abilify and Tenex. She forgot to include that until 3 months prior to the appointment he had lived with me, or that in those 3 months she had changed boyfriends, had a baby, had moved 3 times, and was now living in a tiny travel trailer. The drugs turned him into a zombie for 5 months until I could get a second opinion who got the state to stop paying for the Abilify and lowered the Tenex dosage, but not before she was able to sign him up for Social Security.

    I’m sorry you’re going through so many struggles trying to your son the help you know he needs. I can’t figure out why it’s so easy for some people to scam the system while others are made to play a waiting game when everyone can see that their child needs help now.

    • bakersdozenandapolloxiv

      This is just so crazy…I don’t even know what to say about it.

  14. […] told the results would be sent to me within two weeks. I still haven’t seen them.  When I was in on March 1 (six weeks after the speech evaluation) the SLP hadn’t even sent the results to the […]

  15. Ugh! On the day my kid coded, I did not shed a tear. Or the day she went limp and grey and became unresponsive for a few minutes. I wait until after the crisis and until I am in private to lose it – it’s only now she is 4 and a half I am starting to wrap my brain around what has happened I am starting to process just how awful that first year was. I realised that professionals I don’t work with often`were often presuming things were OK so I learned to say things that were – to me – obvious. “I’m sure you agree that it is not OK that she’s vomiting blood 20 times a day and we need a workable plan of attack.” “I understand you think she is hydrated but seeing as I’ve been assessing her hydration for years, she’s been vomiting for three days and I can’t get even 10 mls of fluid into her and her veins are small and scarred I’d prefer we didn’t take her home without a plan.” “I understand I may give the appearance of having it all together, but I assure you it is an act. Her care takes 6 hours a day hands on – and that’s the bare minimum. I have 6 other kids with various needs. I have no family support locally. We need this help we’re applying for.” All words I’ve had to say :/

    • bakersdozenandapolloxiv

      I have a friend who is a fellow adoptive mom with special needs kids. She has told me I don’t get more help because I appear “too put together”. I am like you, I *never* fall apart in the moment. I stay call and collected and fall apart later. The day Apollo choked and we had to call an ambulance I held it together until Chuck picked us up at the hospital. As soon as we were in his truck on the way I home, I burst into tears. After walking Apollo in to the OR last time and holding him until he was put under, the ENT walked over to me, gave me a hug and said, “Are you okay? You always seem so calm”. That kind gesture nearly made me cry. But I suppose my calm exterior isn’t doing anyone any favors. Don’t worry, the psychologist knows I’m not happy about what’s going on.

  16. […] where are we nearly two years after the referral? Right now, pretty much where we started, but a few good things have come of this incredibly […]

  17. MY GOODNESS! That is ridiculous. My oldest was diagnosed through a private practice but that took 6 months and me calling them every literal month for the 6 months after filling out forms, him going through counseling and therapy, etc. It cost so much money it makes me ill but our other option was the Children’s hospital network in Houston(where we lived at the time) and the wait list just to get an initial appointment(not evaluation) was at the very least 6 months. 🙁

    There are not enough mental health professionals or resources for our country! We moved to East Texas last year for my husband’s contract job. There was one occupational therapy center for children in the entire county. To see a counselor/psychiatrist for adults was nearly impossible. Now we are in NW Louisiana and thankful have more options but still. It is so difficult to find help for mental health issues.

    Hope things are going better for you now.

    PS My dad always tells me, “the squeaky wheel gets the oil.” Maybe just make a alarm on your phone to remind you to call them literally once a day until they do something?

    • Thanks for sharing your story. They literally will not evaluate him (after a 17-month wait). If we go with someone private it is another long wait, and our insurance likely won’t cover it 🙁

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