Hi, my name is Stephanie, and today I wanted to talk to you about what to do if you do
end up seeking a diagnosis for autism and the assessment results come back as negative
or that you do not have autism or are not autistic.
If you're looking specifically for thoughts on self-diagnosis, I already made a video
on that and you can check that out.
Thank you everyone who submitted video ideas for me to consider as well as my channel members
for voting, and specifically on this topic, I'd like to thank viewer Liz because she outlined
pretty specifically her ideas and thoughts about this video, which I will be using in
part.
So, thank you all so much.
Another thing I wanted to get out of the way is that I don't have makeup on, and sometimes
that can make me look kind of sick or not feeling well or whatnot, especially under
the lights that I have.
So, I'm fine.
[laughs] I'm just not doing great on executive functioning and getting stuff done, and so
this is very last minute for me.
So, I did not do my makeup because quite frankly, I didn't feel like it.
I don't typically do my makeup day-to-day.
I usually almost exclusively do makeup for YouTube.
Typically, most conversation around autism diagnosis has to do with the process of getting
said diagnosis.
So, whether that's the first steps or maybe just commentary on how it's not accessible
for everyone or how long it can take depending on where you are located and what avenues
you go through - most of the time, there's not much conversation on what happens if you
get to that assessment, complete the assessment, and the results come back and say, hey, we
don't really think autism is an appropriate diagnosis for you.
I think part of this actually has a lot to do with how you are assessed.
Depending on where you live, or are located, or who you go to, things can vary a lot, especially
in the assessment.
So, especially with adults, it can be quite varying.
I think it's much more standardized for minors, especially children, because most assessments
are written specifically to assess children because the assumption is that you will be
able to catch it in the child and be able to, you know, move on from there and things
aren't really designed to catch adults.
I do believe that over time, this has been shifting and changing a bit, where practitioners
are more willing to look at adults and maybe adapt some of the questions to make more sense
for adults.
However, childhood will always remain very important, including in diagnosing adults,
because they need to be sure that these traits and these sorts of things existed as a child
or else they might be looking at something else going on.
Some people will get back a detailed assessment result that will go over their, kind of, answers
or maybe how many "points" they got toward autistic traits or whatnot in each kind of
category, maybe split by DSM-V requirements and suchnot and some people will simply hear
back from their psychologist that they do or don't have an autism diagnosis.
Now, regardless of whether you get this beautiful, detailed form telling you all the reasons,
you know, why they think that you do or don't and every little detail or whether you simply
get a yes or no answer, there should be an opportunity to sit down with the practitioner
and talk to them about the results and why they think that you don't have autism and
what led them to that.
Hopefully, you'll be able to talk about, you know, maybe places where you didn't meet the
criteria and what that could mean.
If that means that there's something else that you are facing or dealing with or have
or whatever else.
In the case that a practitioner comes back and says, I do not believe an autism diagnosis
is appropriate.
You failed to meet criteria here, here, and here, I would definitely be open to what they're
saying.
We go to professionals for a reason.
They are trained in this kind of thing, and they can look at you much more objectively
than you can through your own lens, right?
So, I do believe that we should be more open-minded to the information that they present.
A lot of times, if you've gone to someone in need of assessment to see if it is autism,
there's likely something going on and hopefully, through that process, maybe they've discovered
what it is.
Maybe it's ADHD, or OCD, or BPD, or who knows what else, right?
So, there are a lot of conditions that do overlap with autistic traits.
But having that assessment may be able to reveal something that maybe you didn't realize
or didn't consider that your practitioner knows more about, and hopefully, that would
lead down the path of you being able to get the appropriate supports and treatments and
things that will help you best, rather than just having to continue to guess that you
have autism or are autistic.
But, what if the reason that your practitioner says you don't have autism is purely because
you maintained eye contact during the assessment or they don't really think that it's appropriate
to give you that "label" at such and such stage in life, reasons such as this that are
very shallow?
And maybe the reasons aren't super shallow, but you have good reason to disagree with
those results and it might be a little more complicated than a simple "you didn't make
eye contact" or "you did."
Now, this, I think, is where things kind of get a little tricky.
In the case that you want to and can afford to, I would definitely suggest a second opinion.
This process can be difficult and frustrating and disheartening, but I don't think you should
be denied a diagnosis because the practitioner that assessed you doesn't understand autism
very well and thinks by stereotypes that eye contact equals not autistic and stuff like
that.
I just think that having to live without a diagnosis because of that person's very clear
failure isn't really fair or right.
And even if it isn't a very obvious bias or lack of understanding that has caused the
negative result, having the information, hopefully, maybe that detailed assessment result or just
the information of the feedback that the first practitioner gave you to be able to bring
to the second opinion would be really helpful so you could explain, here's what they said,
here's where I disagree, and here are detailed examples of why I feel that this is inaccurate.
Now, in the case of seeking a second opinion, it is likely that you're going to have to
do a lot of legwork.
If you're like me, you probably already had to do that for the first assessment or situation
in the first place, which is really frustrating.
I don't know a lot about getting a second opinion because I never had to seek one.
I do imagine it might be a bit difficult if you went to a doctor who is skeptical or unsure
about you having autism in the first place and asking them for another referral to a
different person because you were denied a diagnosis in the first case.
Now, it could be that you can call up your doctor's office and tell them hey, I'd like
a referral to another place for a second opinion and they might be totally cool with it.
... In other cases, you might have someone who is a little more stubborn that doesn't
want to do that because they don't feel that it's appropriate.
I, I personally don't have that experience.
However, a lot of places, you can pretty much call up directly and, of course, finding places
that are willing to diagnose ... adults or assess adults is already kind of a chore.
Definitely can be quite the chore.
But once you find places that seem maybe they would be open to it, you can call up their
office, ask if you have to have a referral, that you would like a second opinion, and
most of the places are likely to at least sit down and talk with you for an initial
appointment without a referral, but some places, again, will require one and hopefully you
can just call up your doctor's office who gave you the first one to be able to do that.
Now, this information is based on limited knowledge from me in the United States.
I know that different countries have different healthcare systems and different things work
differently.
Hopefully, getting a second opinion isn't too difficult where you are, other than, obviously,
the emotional and possibly financial strain that it can take.
But what if you don't have the resources to get a second opinion or maybe you're content
- even though they said you don't, you know you do, maybe they were incompetent or maybe
you just have good reasons why you don't agree with them, what if you're just content being
self-diagnosed?
I think this is actually where it does get stickier [laughs] than before.
Most people would be willing to say, like, totally okay, like, totally valid, and I think
this is where the situation actually matters a lot.
Because, ... again, we do go to professionals for a reason because sometimes, even our,
you know, extensive research online or relating to all these people online or stuff like that
might not give us an accurate picture related to us and what we're facing, and again, there
are many conditions that do overlap with autism.
So, I think it matters why.
So, if you have substantial evidence that they're being inaccurate or maybe they're
being very stereotypical with their interpretations of the DSM-V or maybe their understanding
of autism, again, if this is one of those people that's like, oh, well, you made eye
contact, so you can't be autistic, obviously, that opinion doesn't make you any less autistic
and it's totally valid to continue in self-diagnosis in my personal opinion.
However, I do think it is important to take weight when a professional says that you do
not when they personally have gotten to know you and have assessed you.
So, that's kind of where I am on that, personally.
I would like to prefer professional information, simply because as much as we have worked to
get information available to the public, that's going to be, maybe, more accurate for you
than just me making videos or reading articles, etc.
But again, if it was, like, an incompetent person who clearly didn't understand anything,
then that doesn't make you less autistic, and I'm really sorry that that would have
happened, that you went through everything to be assessed by someone who's like, ah,
eye contact, no autism here.
And look, it's also totally fine if you were wrong about being autistic or having autism.
There's no shame in having been wrong about it.
So, if you go to someone and they're very thorough and they get to know you well and
they go through this assessment, and maybe they conclude something else, that's also
okay.
I don't think that we should expect every single person who's ever thought, you know,
I think this is it, to be 100% accurate about that.
That's why we go to professionals.
So, it's okay if you were wrong.
There's nothing wrong with that, too.
And that doesn't make you any less or maybe not welcome or anything like that.
We are all neurodivergent people and even then, even if you somehow end up to be the
most neurotypical person on the planet, we still love you.
It's totally fine.
But, whatever the results are, the whole purpose of a diagnosis is to try to gain understanding.
So, through this process, what we're trying to do is find answers and use information
to be able to help us, right?
To help us to grow, to find the right supports, access the, you know, things that we need,
those kinds of things.
That's why we have diagnoses.
So, if you are finding that what you're doing is working for you and you're not in a place
of distress and it ends up that you have to just continue self-diagnosed and you're content
with that - cool.
If you go and find out that you're not autistic and they find out that you are something else
or some way else, cool.
Because that means that you'll have access to the correct help and the treatments that
are best for you and the supports that are best for you.
Anyway, thank you so much for watching.
I hope that this video was a little bit helpful and honestly, I kind of that it helps calm
some of you down, because going in and thinking, what if it's not this, what if it's not that?
At the end of the day, it's going to be okay.
The whole process here is to find answers and what works for you to help you, and if
you don't get a magical label that you thought you were supposed to have, it's going to be
okay.
Plus, a lot of times, even though we harp on professionals who, for some reason, don't
understand that some of us can make eye contact or have a friend or whatnot, there are many
professionals out there who actually do know what they're talking about and may see you
and be like, oh yeah.
I know, I know you.
You autistic.
[laughs] Anyway, I'm going to stop dragging this on.
Thank you all so much for watching.
If you enjoyed it, go ahead and give me a thumbs up and let me know your thoughts about
this in the comments below - if you've been denied a diagnosis, if you've ever had to
go for a second opinion, any of your experiences or thoughts on this - let me know in the comments
below.
And if you enjoy autism-related content from me, you can hit that subscribe button.
I upload to this channel every Thursday at 4pm Central Standard Time.
Thank you to everyone who supports me here on YouTube as YouTube members, my Patrons
over on Patreon, and a special thank you to my Spaz tier patron, Marie Johannson.
Thank you all so much for watching.
I hope that you're having a wonderful week, and I'll see you in my next video.
Bye!