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Finally Saw A Decent Doc - ASD Assessment Update

zozie

zozie

Well-Known Member
Well, nearly 2 months after my first, rather wretched assessment process, I finally saw a young PsyD student (nearly done) with extensive experience interning at a private clinic assessing autistic kids and adults. The clinic in question just won an award for their research on autism diagnoses and how to improve the process for girls and women.

My young doc looked over my assessment results and said they were "painful to read", "full of contradictions", and "also have a lot of typos", all of which are true. He didn't offer a formal second opinion like I'd hoped, but he advised me to have my assessment results on hand when my 16-year-old gets assessed next month (by the award-winning doc he interned for), as the assessor there will be very interested in my history as well. But this young doc did say several times that he agreed with my assessment of myself as autistic. I have a feeling that's all he's qualified for at the moment, as he wraps up his PsyD schooling.

I felt seen as a person, not as some insane and damaged metric. Repeatedly, this doc apologized for me having to go through the experience I did, and I tell you I left there feeling so much better about myself.

It's not a formal second opinion, but I'm one step closer.

Aside: This new doc asked where the first doc had gone to school. I said, "She's from Chicago", because I remembered that from her profile on the clinic website. This doc said, "I was going to say, 'Anywhere but Chicago'. They have giant cohorts there, just degree mills, and they don't train their students very well."

Was nice to hear.
 
zozie said:
Well, nearly 2 months after my first, rather wretched assessment process, I finally saw a young PsyD student (nearly done) with extensive experience interning at a private clinic assessing autistic kids and adults. The clinic in question just won an award for their research on autism diagnoses and how to improve the process for girls and women.

My young doc looked over my assessment results and said they were "painful to read", "full of contradictions", and "also have a lot of typos", all of which are true. He didn't offer a formal second opinion like I'd hoped, but he advised me to have my assessment results on hand when my 16-year-old gets assessed next month (by the award-winning doc he interned for), as the assessor there will be very interested in my history as well. But this young doc did say several times that he agreed with my assessment of myself as autistic. I have a feeling that's all he's qualified for at the moment, as he wraps up his PsyD schooling.

I felt seen as a person, not as some insane and damaged metric. Repeatedly, this doc apologized for me having to go through the experience I did, and I tell you I left there feeling so much better about myself.

It's not a formal second opinion, but I'm one step closer.

Aside: This new doc asked where the first doc had gone to school. I said, "She's from Chicago", because I remembered that from her profile on the clinic website. This doc said, "I was going to say, 'Anywhere but Chicago'. They have giant cohorts there, just degree mills, and they don't train their students very well."

Was nice to hear.
Click to expand...
Isnt it wonderful when you find proper support? Its like christmas! I bet you felt a huge sigh of releif, when you were finally understood and offered proper assistance
 
This sounds good, and hopeful. Good to know your teen will be seen by someone who is clued up. What you shared of your report here was pretty much laughable, I thought. It seemed like she was unnerved by you and felt like she had to assert her professional status. Not appropriate in diagnosis. But a worryingly common experience for adults with autism who attempt to get diagnosed, especially women.
 
I'm glad to hear about this! I'm in the process of getting assessed, and I'm extremely nervous about it because of not being taken seriously. I've read so many horror stories of women in particular having to be assessed multiple times, being doubted or outright laughed at. Like it's not a stressful enough experience, people feel the need to treat you like you don't know yourself.

I'm taking a few psychology classes in uni right now, and both of my profs have made it very clear that an individual can go to 4 different mental health specialists and get 4 different diagnoses. It's difficult and frustrating. I wish that peoples lived experience had more weight and doctors took peoples concerns more seriously.

Good luck with this new doctor!
 
I am very happy for you! The things you wrote before we indeed just plain painful to read. Such invalidation!!
 
N2k12 said:
Yea its painful alright. Welcome to my little world. Is it just me? Or is this the "norm" for ASD peoples?
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I am truly not sure. There is so much suffering in NTs, too. Maybe we just have more trouble convincing ourselves that smoke and mirrors can make us happy?
 
N2k12 said:
Isnt it wonderful when you find proper support? Its like christmas! I bet you felt a huge sigh of releif, when you were finally understood and offered proper assistance
Click to expand...

Yes, the pain of being misunderstood is very real, as is the relief when one finally is seen and understood.
 
Thinx said:
This sounds good, and hopeful. Good to know your teen will be seen by someone who is clued up. What you shared of your report here was pretty much laughable, I thought. It seemed like she was unnerved by you and felt like she had to assert her professional status. Not appropriate in diagnosis. But a worryingly common experience for adults with autism who attempt to get diagnosed, especially women.
Click to expand...

I got the sense that she was threatened, too. One of my favorite responses to my exhaustive, original assessment thread was about autistics exploding if they make eye contact, so that's why they're "unable" to make it, as this assessor claimed.

But there is hope out there, and the pain of the first go-round is dissipating.
 
_eri_bellehumeur said:
I'm glad to hear about this! I'm in the process of getting assessed, and I'm extremely nervous about it because of not being taken seriously. I've read so many horror stories of women in particular having to be assessed multiple times, being doubted or outright laughed at. Like it's not a stressful enough experience, people feel the need to treat you like you don't know yourself.

I'm taking a few psychology classes in uni right now, and both of my profs have made it very clear that an individual can go to 4 different mental health specialists and get 4 different diagnoses. It's difficult and frustrating. I wish that peoples lived experience had more weight and doctors took peoples concerns more seriously.

Good luck with this new doctor!
Click to expand...

I hate to say this, but it seems that competence in doctors follow a trend of public/private health resources. The former, terrible assessor was part of the public health system and the latter part of a private practice. If I had a thousand-plus dollars to spare, I'd have signed up with the award-winning doc in the first place, but it looks as though I'll get there one way or another.

My teenager has one of two insurances that the private company accepts, which is why they are going to be seen, and thank goodness.
 
OkRad said:
I am very happy for you! The things you wrote before we indeed just plain painful to read. Such invalidation!!
Click to expand...

After a while it became mostly just obnoxious, but until the relief of Wednesday, I hadn't realized how much energy I was still devoting to justifying my own existence, even if only privately.
 
OkRad said:
I am truly not sure. There is so much suffering in NTs, too. Maybe we just have more trouble convincing ourselves that smoke and mirrors can make us happy?
Click to expand...

One of the benefits of having to live 40 years as an ND in an NT world is that I escaped ABA and its truly horrid effects (or so research and autistic voices seem to say). So trade one suffering for another, I guess. And I agree that NTs have their own kind of suffering, something that benefits us all to remember and understand.
 
Glad to see that you and your daughter are on a new path :-)

What we really need is more medical schools and graduate psych programs get training about ASD.
As was the case in your first experience, a lot of doctors say they do it, but it's not their thing, and let's be honest, people respond to incentives, and regardless of the field, there are always people who will do things that they really have no business doing because it's an easy paycheck, and who's to question the professional? Most people just sulk and walk away.

Autistics for Autistics Ontario (A4A), an affiliate of the Autistic Self Advocacy Network (ASAN), provides presentations and resources to MD students in their area. We could use that everywhere, but that will require volunteers, but also the acceptance of the schools themselves.
 
zozie said:
Well, nearly 2 months after my first, rather wretched assessment process, I finally saw a young PsyD student (nearly done) with extensive experience interning at a private clinic assessing autistic kids and adults. The clinic in question just won an award for their research on autism diagnoses and how to improve the process for girls and women.

My young doc looked over my assessment results and said they were "painful to read", "full of contradictions", and "also have a lot of typos", all of which are true. He didn't offer a formal second opinion like I'd hoped, but he advised me to have my assessment results on hand when my 16-year-old gets assessed next month (by the award-winning doc he interned for), as the assessor there will be very interested in my history as well. But this young doc did say several times that he agreed with my assessment of myself as autistic. I have a feeling that's all he's qualified for at the moment, as he wraps up his PsyD schooling.

I felt seen as a person, not as some insane and damaged metric. Repeatedly, this doc apologized for me having to go through the experience I did, and I tell you I left there feeling so much better about myself.

It's not a formal second opinion, but I'm one step closer.

Aside: This new doc asked where the first doc had gone to school. I said, "She's from Chicago", because I remembered that from her profile on the clinic website. This doc said, "I was going to say, 'Anywhere but Chicago'. They have giant cohorts there, just degree mills, and they don't train their students very well."

Was nice to hear.
Click to expand...

This reminds me of my experiences on my road to diagnosis 20+ years ago. The neuropsych I saw first, who I'm told was at the top of her field when it came to acquired brain injury (but was clearly clueless with developmental ones!), did a full day assessment with me, and then in her written report contradicted herself several times, had poor grammar, and after extensive discussion with me on some subjects, wrote all my concerns off as non-existent! Not even "unimportant" , but "non-existent! When she gave me the results (before I saw the report) she tried to tell me that I had no problems, and there were no problems with the way my brain was wired in the sense of being NT, not in the sense of "being different is ok)! ... not too terribly long after (I believe lass than a year) the learning disabilities person who did a second assessment could tell, before she was even half done, and without scoring anything, that there were very obvious differences between me and someone who was 'typical!! It was such a relief to know it was so obvious when someone who actually knew what they were looking at saw me!

When I finally saw (a third person) who could officially diagnose me, she was quite compassionate about how long it took me to get a diagnosis, and stated her regrets about it in the report!
 
I'm glad to hear zozie that's it's become a little more hopeful. It's amazing how hard we have to battle for decent medical care.
 
VictorR said:
What we really need is more medical schools and graduate psych programs get training about ASD.

Autistics for Autistics Ontario (A4A), an affiliate of the Autistic Self Advocacy Network (ASAN), provides presentations and resources to MD students in their area. We could use that everywhere, but that will require volunteers, but also the acceptance of the schools themselves.
Click to expand...

When reading NeuroTribes, I learned that the ASAN lobbied the American Psychological Association hard to include a provision on masking in the DSM-V criteria. Without them, the diagnosis would not include any voice of autistic experience whatsoever. Insane (not hyperbole).

And yes, we do need more training. There's an autism center on my campus but frankly I'm scared to go there because ABA is such a big thing here in Utah. We have a graduate program in Autism Studies, but you come out of it an ABA tech, so...mixed feelings.
 
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