HELP! Speech Pathologist wants to Dismiss ADOS Diagnosis!

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I am fuming right now. I was fuming last week but now I am even more upset and have no idea where to go from here.

My son has seen at least a dozen doctors on various teams since July and has been through a psych/behavioral clinic eval, an ADOS and Occupational Therapy and has been diagnosed with ASD. Seeing anyone for speech was delayed because of limited availability. A day before the appointment I received a call from the speech rehab center saying his insurance information needed to be updated and I updated them. It's basically Medicaid but has not been a problem at all and I've even verified in the past that his insurance was accepted. He has had this insurance the entire time through the ADOS and other evals and therapy. The lady got snippy with me on the phone and started basically saying something about I need to update the insurance company (not Medicaid) when it went into effect. I explained it was already in effect several times and she just kept being nasty with me for no reason at all. I figured it was just her having a bad day and wrote it off.

The next day I went to his appointment that was supposed to evaluate his speech. My son was acting up because he didn't sleep well the night before and we had to be up at 5AM and his whole routine was thrown off. One of the first things the guy does is start in on me on how because he has Medicaid, he will need a whole other assessment when he turns six in a few months and keeps going on and on about how they bill stuff differently. Half of the time he spent lecturing me basically on how I probably won't get help (even though I have up until now) for anything and advising me to go to a community health center. This was NOT the purpose of the appointment and since when is he a billing specialist anyway? It's none of his business really because he is supposed to just be a Speech Pathologist. While my son was distracting me with his behavior (hiding under a table, yelling loudly, running around the room, etc.), he started asking the same questions basically that I've been through with his psych eval and his ADOS testing. I told him some parts but was confused since we were there for speech, not for a re-diagnosis. I kept re-iterating the speech part because that is what I was told we were there for (and were supposed to be there for). He was rude and kept telling me my son was just "attention-seeking" and needed consistent discipline, etc. It was such a joke! Then he wanted to do the speech testing (which is the whole reason I thought we were their and didn't understand the rest of the grilling he gave me) and asked me to leave the room for it. There is no two way mirror and it's in a back office where he gave the test with no one else in the room and the door CLOSED. I left and waited in the waiting room for 25 minutes but since he was so rude, dismissive, accusatory and gave me the creeps, I asked the staff to take me back there because frankly I wasn't comfortable with my son alone in a room with this @$$ for that long. When they opened the door, my son had his back and face turned away from the testing material with his arms crossed and a scowl on his face clearly upset and not participating (which the pathologist put otherwise in his report). The guy was clearly NOT happy I wanted to be in the room and tried to basically order me to leave. I simply said I was overprotective and wanted to stay in the room because I didn't feel like explaining why I thought he was a jerk and I didn't trust him alone with my son. He was irritated and I tried to get my son to complete the testing but of course he sensed the guy's irritation and didn't want to complete the test to begin with. He tried to tell me he could say all his sounds (despite other evaluations saying otherwise and the doctors, teachers and I hearing otherwise) and didn't need any help with speech. He also went on to lecture me on how to discipline my child and that basically my kid is just seeking attention and again that I needed to ignore the "bad" behavior.

Today I got the report in the mail and so much of it is wrong along with him stating at the end that he doesn't think my son has ASD and that I agreed with him! I never agreed with ANYTHING he said and in fact spent most of the time disagreeing with him. I am so frustrated because he has no credentials or rights to even state that. He was simply supposed to evaluate his speech. I don't even know what to do about this. Do I complain to the main hospital or the clinic? Since the billing lady and others at the clinic had the same negative, dismissive attitude despite his diagnosis by two other centers (one the official ADOS testing), I don't really want to deal with them again but want the record set straight. The other evaluations and doctors he has seen up to this point have been great and very helpful but this guy just seemed to want to dismiss their testing and observations (they spent HOURS with my child doing actual testing and this guy spent like 20 minutes with me and him together and then 25 minutes in the testing). What gives him the right to write up such a false report and dismiss my child like this?! I'm worried his insurance will now refuse treatment because of this one, unqualified report. Please help! Has anyone dealt with anything like this before?

I would set up a meeting with him just for you to talk to him about the report - without your child there. Set him straight and let him know that you know he doesn't have credentials to diagnose (or un-diagnose) ASD, nor did you appreciate his attitude to you or your son, or his parenting suggestions - since again, that is not his area of knowledge or responsibility. His job was to test speech - period. Nothing else.

I would get an appointment for another speech pathologist and don't go back to this guy after you set him straight. If he was suggested to you by another group or doctor, let them know what a horrible experience it was. I would let the team who did your ADOS know as well, just so they are aware of which providers to steer their patients away from.

As for the insurance issue - I don't have experience there. We are still trying to figure ours out. I know generally insurance will pay for evaluations but not much after that - some companies consider speech/ABA/OT/etc to be "educational" and not medically needed. On the other hand some companies are great with coverage or you might live in a state that mandates ASD coverage. But I would assume that the official diagnose from the ADOS is the medically relevant one - not a report from a speech pathologist who just met your kid.

I'm sorry you had to deal with such an asshat.

I would write a letter to the practice with a copy to the hospital and your insurance (and anyone else his report may have been sent to) clearly stating all the points in his report that you know to be incorrect. Forget the opinion about who should be diagnosing what; you have plenty to discredit his report with sticking to facts.

Facts like his writing that you had agreed with certain conclusions when you had not. List each and every one. Sample, "Dr. X's report states I have agreed that my son may not be properly diagnosed ASD; I never made such a statement and do not agree with Dr. X's conclusion." And so on down the line.

Then you write your conclusion, along the lines of, "given the vast differences that arose in our first meeting, I will be seeking another pathologist to work with my son. I do not feel Dr. X has established any level of trust with me or my son, and our initial exchange has left me questioning his judgment, his commitment to helping my son, and his ability to help my son."

Second sentence should probably be left out, it is pretty strong, but I get the sense you have a need to say it.

And then find a different professional to work with. There is no reason to continue to fight with someone you don't get along with; from what you've described, I can't imagine it getting any better. So move on.

I am going to suggest you be careful how you frame your negative experience to succeeding professionals, however; you don't want to start off a new relationship with them thinking you are negative and critical, or a "difficult patient." I never complain to professionals about others; I let them reach that conclusion when appropriate. I don't hide it, but I am tactful. Statements like, "we had trouble communicating," "my son and I both had trouble developing trust with him," and "his conclusions weren't sitting right with my instincts even though I tried to give them a fair shake" are all ones you can effectively use. Sometimes the new professional will ask more questions and then you can give a little more information, but still stick to the facts and keep negative judgment out of it. Like I noted at the start, let them reach that conclusion (they usually do, and then I'm still tactful about agreeing with them); I just find it a lot more effective. Starting a relationship with complaints can really put professionals on the defensive and prejudice their judgment. JHMO, anyway.


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I would not communicate with them again, as for me, it's too frustrating listening to people defend the indefensible. Though you could complain to the center or state licensing authority, but people will usually defend their own.

Does the speech rehab facility have a specially area? I am wondering whether they knew what to do to evaluate a child on the spectrum.

As far as your insurance company covering, it seems like they would have to unless they paid for another expensive full evaluation. A speech evaluation is a piece of the puzzle, but it's not enough to make or break the diagnosis which as far as I am aware has to be done by a psychologist or a medical doctor or osteopath.

I have some bad evaluation stories and some good ones. I don't know how common bad reports are, but I really believe it's better to let the bad report fade away after letting any providers who see it and will continue working with your child know you're concerned it doesn't reflect your child's needs. Don't make it about the speech therapist. Keep your focus on your child and that helps others do the same.

Thank you all for your kind words and great advice. I am certain I have undiagnosed (or misdiagnosed really) AS myself and this really upset me to the point it gave me a headache and I spent the afternoon in bed. I really did try to make the best of the experience while we were at the appointment without being rude and due to his attitude, I realized during the appointment that I could go to another doctor if need be so I just stopped arguing (talking really) so we could leave and stop wasting our time there. Since I worry though about it being incorrectly reported on his record, I will follow up with a letter disputing the incorrect notations. I really hope they send a survey out (the hospital this center is a branch of usually follows up with a satisfaction survey) because then I will tell them how horrible this experience has been. I was told before we even had ADOS testing that it had to be done in the specific facility we went to in order to be covered by my insurance and allow future therapy to be covered by insurance so I'm not sure why they were giving me the fifth degree about that. I will try to contact his original team of doctors (I have the head doctor's phone number and she told me not to hesitate to call if I needed anything...again they are truly a caring group of individuals) and see if she can recommend anyone else for speech. I will not return to see him (or go to that facility again) since it was so negative and I have no reason to put myself through that again. The facility we went to hosts many different areas of rehabilitation apparently including physical and occupational therapy, speech-language pathology, physicians offices and psychology/neuropsychology services. The actual speech pathologist though seemed from his emphasis on my son's behavior as a disconnect from his sensory, social and emotional issues from this one visit seems like he has little to no experience with high functioning children on the spectrum. I even went so far as to point out that although he may "seek attention" at times, his autism diagnosis is not based on any attention seeking behaviors. I even gave an example of his aversion to water, certain clothing, adherence to routines, obsessions, etc. but he completely ignored that and any behaviors during the meeting itself in the report. Several times I had to remind my son to use his indoor voice even and he put specifically on the report no problems in modulating volume (one of our bigger issues at home, school and in public)!

Professionals have discounted and labeled me as the problem, too. I think that for some reason, even though they would tell you it's genetic, and siblings are more likely to be on the spectrum, and maybe even fathers, they don't generally make the connection that the mother in front of them might be, too.

I used to argue the details. Never works. The people who change reports tend to offer upfront for me to let them know if I see any errors. Rigid people are a waste of time and upsetting to talk to as they'll generally not listen to any argument once they've made up their minds

Somewhere along the way I realized that people who agitate me aren't usually individuals who will help my child and that having a really difficult interaction like this may help me protect, or at least understand. I tell myself that when something happens and its somewhat comforting to at least know there's some good comes of it.

Oh man...yeah, I need to remember that. I'm a fighter and pretty much waste my time trying to change the minds of people who really won't even help me/my family in the end.

Yes and sometimes I am thankful for that so they don't label me further but then sometimes I worry while someone is telling me about my son's poor eye contact that they will notice I'm fiercely trying to look at their eyes an appropriate amount and still hear what they are talking about and not feeling overwhelmed that I'm staring too much or not looking at them enough. I realized a long time ago that I needed to stop caring what others think, but I still have this terrible need to blend in as much as possible. I can mimic and be chameleon-like when I want to so I think sometimes I just fake it and they assume I am not also on the spectrum.

I was just having this exact conversation in another thread - and I'm the same way about chameleon-like behavior (the worst is when I accidentally take on people's accents or idiomatic speech, it's become an unconscious behavior which sometimes works but sometimes I sound like I'm making fun of them.)

At any rate, I second what DW said, and I would make sure you do it in writing and not verbally, then just pick a pertinent phrase to use verbally, e.g. "I didn't feel comfortable with this particular professional," use it quietly and only in response to questions so as not to babble (which I'm guessing from the above is another tendency we share when stressed.)

Before you send in the letter, have someone else you trust read it. If you need to, post it here with personal information removed.

I can't add anything except to second what DW and others have said.

You know, it's bloody hilarious... They will look at you and tell you that they think most forms of autism are probably X-linked recessive traits (certainly the case in my family)... But even the medical professionals have listened to so much media crap that it never occurs to them to wonder if the retiring woman speaking to them in technical terminology might also be ASD. MORONS-- but their stupidity is probably to our advantage, since they'd take us even less seriously if it DID occur to them.

I'm sorry you got stuck with an asshat. Report the dick to all appropriate authorities (and if you can do it politely, stop by Pittsburgh someday and I'll buy you an ice cream).

I do that exact same thing. No one has ever mentioned it to me, but maybe they were just being polite. I (unconsciously at times) copy their mannerisms, words or phrases they use, accents but subtly enough I think to where they know I'm not mocking them, but joining them really. Or I do it when they aren't around. I try to stop myself if I notice it. When I was young, I thought everyone else did the same. It sounds silly but my kids love the book "A Color of His Own" and sometimes I really feel like the chameleon in the book who does everything he can to develop his own "color" but despite his efforts, he is still always mimicking the world around him and it upsets him. It isn't until he finds a friend who is also a chameleon that he finds solace this and that it is just who he is. I hope other parents out there find this book if they have kids on the spectrum that mimic too. It is comforting to my kids.

What state do you live in? Here in Wisconsin we try every summer to get my son a non-verbal autistic 8 y/o speech therapy. Every year we get a letter saying he doesn't qualify and is not in need of speech....hello non-verbal. And every year we have to resend the professional diagnoses and sit for another 2 weeks for a reply. By the time all this is done and we can finally see a speech therapist it is a month before school starts. Its a way the state keeps costs down plain and simple. The only way to fight it is to make sure everything is in writing and show them you aren't going to give in, it sucks but if we don't stick it out and get the services our kids need they wont get them , no one else is looking out for them.

asdfor3 -- have you tried to get Extended School Year (ESY) written into his IEP? He ought to be getting speech as part of ESY, you shouldn't have to be making the case at the beginning of summer every year.

Michigan, but I think it's that way everywhere sadly. Everyone is looking for a way not to provide services. I do so much at home with my kids but obviously I can only do so much. That irritated me too. At the end of the appointment he was like "look up on the internet what you can do to help his speech". Are you for real?! Isn't that why we were there and what he was vehemently saying my child didn't need?!