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Argument clinicBy Cathy Jameson

“Does your son know you are calling about him?” 

In all the years I’ve had to make phone calls on Ronan’s behalf, I’ve never been asked that question before.  I thought maybe I’d jokingly ask Ronan, who was on his way to use the bathroom, if it was okay for me to talk about him.  But, my 17-year old non-verbal child with regressive autism doesn’t understand the type of phone call I was making, so I opted to let him be.  Ronan, even if he doesn’t realize it, relies on me to call people when we run into problems related to his medical care.  That includes dealing with a major problem, like the one that prompted this particular phone call.    

Unsure of why this insurance representative was asking me that question the way she was, I slowly replied, “Yes...”  

She continued curtly, “And are you authorized to speak for your son?”

“Of course I am,” I stated proudly. “I’m his mother.” 

I actually smiled while saying that.  

Seconds later I had to repeat myself, “I’m his mother!”  But that time, I said it in a perturbed voice.  I also added, “Are you kidding me?” when I said it.  The response I got was silence.  The representative had just told me I could not ask any further questions or get any details about my son or his plan.  I asked the representative to look at her screen again and tell me if it wasn’t me, his mother, then who is authorized to speak to them?  Who?? 

“I can’t tell you that because you are not allowed to know that information.”

I was not polite in my response and could only blurt out, “You’re not kidding me, are you?!”

I never yell at people like that, but this gal got an earful from me.  What information she would divulge about Ronan was absolutely and completely wrong.  I told her that and then asked her politely to please update the information.  Because it was critical that I get the information she had at her fingertips, I politely said that I would be happy to give her the correct information if she would allow.  She would not because “Ma’am, you are NOT authorized.”  I immediately asked to speak to a manager.  No.  A supervisor?  No.  A senior member of the team.  NO.  Sometimes it helps to bypass the first tier of representatives.  Over the years, I’ve learned that they can only do so much.  I was not allowed to speak to anyone in that first tier or higher though “because our system doesn’t recognize you.”  

I’m not sure why, but she was fuming when she said that.  

I was, too.  

I don’t think her anger was warranted.  

Mine, on the other hand, was.  I was dealing with a pretty big issue already and now had an angsty customer service rep giving me attitude telling me that I didn’t exist.  I wish I’d had our old house phone.  Hanging up and slamming a cordless phone down doesn’t have the same effect as those old rotary phones do. 

Before I hung up, I did manage to get another phone number from the woman to try.  “Maybe they will help you.”  This was already day 2 of trying to fix a problem that never should’ve happened, so I picked up the phone and tried again.  The next call would be no better.  

Nor would the other 10 I made.  In fact, with every call, text and email I sent about the insurance and benefits issue, the more problems I discovered.  One solution could work, but it would only be temporary and would come with a hefty price tag.  Even worse, I’d soon learn, the benefit that had been promised, and that has always been covered, is not just out of reach at the moment—it’s going away.  

Could that first disgruntled employee have shared that bit of news with me hours earlier?  

Could she or any of the several other people I later tried to talk to have offered that important piece of information with me before I cried my eyes out in front of one of the reps I was able to find in person?

Could anyone have offered just a tiny bit of compassionate about this situation and the ramifications we’ll feel if Ronan permanently loses a promised benefit that has, for over a year, been documented as medically necessary? 

In the hours I spent on the phone last week, which went well into Friday evening, only a few people were polite.  The one that’s been the most helpful is the one without a big job title.  Those with more experience were unhelpful.  Those who had the power to override the system were unkind and the least respectful.  This person was the opposite.  She was attentive, kind, and supportive.  She could only do so much, but thankfully, in her system, I was authorized to speak for Ronan.  Better than that, she could share with me what she saw on her end.  After several back-and-forth messages, she shared, You have enough on your plate with having a special needs child…you shouldn’t have to worry about all this.

She’s right. 

But I am having to worry about it because other people who could help me did not. 

As of this today, the problem we had still needs to be resolved.  But I have at least 1 person on board who wants to make sure Ronan gets what he needs.  She’s worked overtime, literally, to help us.  I won’t know until tomorrow when I can start making phone calls again how the situation will unfold, but it’s nice to have someone willing to go above and beyond what’s expected of them.  If other people I’d spoken to last week shared that same work ethic, I believe I’d be going in next week feeling a lot better than I do.  Right now, I’m anxious.  But I won’t give up trying to help Ronan.  Authorized or not, he needs me to speak for him. 

Cathy Jameson is a Contributing Editor for Age of Autism.  



Once someone is over 16 the insurance companies get very picky about talking to anyone without authorization. My insurance company has a form you fill out and the person has to sign giving that permission. Different levels of permission can be given, e.g. to discuss billing info, to discuss medical treatment info, or both. I suggest forging the signature for those that can't sign. Luckily my son can sign his name. Lord knows I've registered on all sorts of online medical accounts for my kids since I can supply birth date, etc. and then use my email. Ditto the advice on guardian ship.


Guardianship or Conservator-ship? Or both?
We have only done conservatorship for our adult son so far...
It is a one time thing, we have hired an attorney, and it is done in front of a judge.
But only once.


If an insurance company fails to communicate, file a complaint with your state's Insurance Commissioner's office, Attorney General & even Secretary of State's office. They are licensed to do business and cannot shrug off legitimate questions regarding coverage.

If coverage is denied, appeal, appeal & appeal.


According to a recent RFK, Jr. interview, Pfizer gave a million bucks to Trump's inaugural, and Trump stopped taking Bobby's calls.

Aimee Doyle

@Cia -

Trump has done NOTHING to help the autistic. He has consistently put pro-vax individuals to head up the relevant agencies - CDC, FDA, HHS. He advocates cutting Social Security benefits (my son and many other adults with autism get SSI) and Medicaid (which pays for day programming and housing for individuals with disabilities - without Medicaid funding he would sit home all day). He appointed Betsy DeVos to head the Department of Education; she knows nothing about special education -didn't even know what an IEP was.

He has even advocated getting vaccinated for measles and flu shots.

The Autism Cares Act (crappy name) has been around since 2006, has not resulted in one treatment or therapy for autism, has not resulted in a reduction in the autism rate, and has been hijacked by the neurodiversity movement. It has never addressed the vaccine issue, and the authorizing committee, the IACC (Interagency Autism Coordinating Committee) public members are anti-cure advocates. Billions of dollars have been spent without any impact that I can tell.


Cathy, have you tried calling your representatives, state or Federal? Our Representatives have local offices and they are eager to help any constituent who runs into a problem, and surely the hell you've experienced must qualify for their help.

Candy Kane

I have found it useful to let friends and relatives know then name of the frustrating insurer in a public way. If you get this from an Employer I have asked employers HR to advocate .


I hope the new act will pay for housing for my daughter. I like and respect Trump very much at this time: I voted for him three years ago, but only as the anti-Hillary figure. And he SAID at that time that he would do something to help the autistic. And he just got a 220 billion trade deal with China which will benefit American industry and agriculture. While he was under what would be unbearable stress for me, the impeachment trial, which has not found evidence of any wrongdoing at all.

Adela Ludeke

It's always easier to say "kids with autism" than "adults with autism". Why? Two reason. First, autism rates have risen dramatically. Second, even if autistics grow up physically, they rarely do mentally.


As AoA is also read in Europe, I’d like to mention that
CORVELVA has just posted a video (in English) on behalf of the
European Forum for Vaccine Vigilance, announcing this years actions.

Bob Moffit

Has anyone heard that President Trump SIGNED this 18 BILLION autism cares act??? Is this a good expenditure of money or what?


I know you were going to seek guardianship, which is probably appropriate in your case. You could also write a medical power of attorney specifying the powers you would have on his behalf, and having it signed by all parties, witnessed, and notarized at a bank. The power of attorney would be free and could be changed or revoked freely without the complications, annual review, and expense of the guardianship. You can also do a legal power of attorney. I did both with my daughter, who is her own guardian.


It is refreshing to get someone at an insurance company that 1) knows what they are doing and 2) is kind and willing to help. Unfortunately, they are the exception not the rule. My son turns 18 toward the end of the year and I was just thinking about this earlier today and making a note about guardianship. Your post just reminded me that not only do you have to go through that, but then you have to get it on file with EVERYONE so they know you are the one who can speak for your child. Situations like this make me want to put my son on the phone and take up their time so they can try to ask him their endless questions which he could not answer except with a hum or a grunt or by repeating exactly what they said to him. It would not get us anywhere, but at least let them see WHY we are making those calls for our kids...then maybe they could be frustrated, too! I sure hope you can get Ronan's situation fixed. Good luck.


Oh Cathy, I’m so sorry you are dealing with this! Praying for you and Ronan.

Unfortunately, having a special needs child means you have all the things to worry about on top of that.

Years ago, I had a big insurance problem that no one could help me with. Then I had an amazing supervisor help me and 2 years (and thousands of dollars) worth of medical bills were finally resolved. I sent her chocolate at Christmas. I wrote a letter to her supervisor - but then she got promoted and I had to start all over :(

Grace Green

Many people in the UK with autism or ME suffer this kind of treatment. And if you're autistic you probably won't end up in tears, which I think might be what convinces some public servants. A large proportion of us give up and become dependent on relatives. It's just not worth the stress. However, good luck with your next attempt, you might just succeed.

Vicki Hill

Once he turns 18, be sure you have guardianship in place immediately. And keep a copy of the guardianship document with you at all times. For NO ONE will allow you to speak for him without a copy of that guardianship document in their hands. HIPAA

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