2011-2014. The original blog that got it all started. It represents reflections I had and sharing I did, during a time period in my life, freshly post autism diagnosis, worsening illness, though I wasn't yet clear on things. I was trying to process and going through a lot of hard learning. There's some good stuff in here, which helped others, and there's also some stuff that no longer reflects my situation and/or evolved insights. Please read with this in mind.
Thursday, September 25, 2014
Entry 64: “Update Regarding Breaking My Silence”: my medical care is still tainted
My medical care is still seemingly tainted, and I
have genuine health problems. They are barely getting addressed. They're not
being thoroughly evaluated. Not only do I not feel entirely safe; I have no
faith in the safety of system (in my case especially) anymore. They don't
understand that I experience my symptoms differently, and lack trust. Doctors
going down the wrong avenue many times before have burned me.
There are the facts: I am an autistic woman, with a
diagnosis official enough to qualify for a government support program in which
I am in. They know this, are they trying to dance around it and believe some
bogus report? Something feels odd to me, but I’m not sure what. I am
Often, when I get investigated for a certain
“textbook condition” it turns out to be something different, and they
frustratingly overlook things. I have some evidence of certain things, such as
a mild complement C3 deficiency (an immune protein.) However, the information
is limited, because investigation has been very limited. After what happened,
one could imagine this only getting dangerously worse; the word to describe it
could almost be blacklisted.
Sorry to sound dramatic,
but it’s as if the more that I talk, the more they want me to shut up. It’s as
if they don’t want to help me find the causes of my issues, they want to bury
them. So they need to believe crap written, at least in some regard. I don’t
get it. Maybe they don’t fully understand the answers, and they don’t want to
admit it? Autistic body types are so different; in the way they manifest their
Yes, I have a history of some past diagnoses that
give clues, to me, and from a naturopathic/integrative point of view, at least.
However and again, they have not recently been
further evaluated, despite symptoms changing, worsening, and potentially
progressing though I meet them with all the "my own witch doctor"
fight I can muster. I do this because I have to keep going, for so many
reasons...and especially because I'm a mother.
I come from a more holistic, naturopathic view on
things. I prefer to go that route as much as I can, unless the situation is
more dire and acute. Even then, I'm so sensitive that I never know if the
"treatment" will make it worse in some way; and it often does. I must
have painfully unrealistic expectations of this system, at this time. It must
just be, simply, un-evolved. Well, it needs to get on with it, for the sake of
autistic people. It can’t just continue to turn a blind eye. I am paying for
it, so may my family. I want a better future for my children. I hope the system
changes by the time they’re all grown up.
I'm very hypersensitive and reactive to Rx
medications, and in addition, I react backwards most times. They treat me as
though I'm being impertinent or haplessly psychosomatic when I try to politely
imply that I cannot be a guinea pig, and that I need actual testing, and
when I try to connect the dots to see how things may potentially be relating
with each other. The frustration, in the face of my having to fight progressing
illness episodes of various kinds, is agonizing.
To them everything is separate...my belief is it's
just not like that, particularly for me. Also, the nature of my challenges is,
again, common among autistic people. All my friends in the community,
especially other women, have similar issues to me.
This may be most essentially due to the fact that
autistic people are far more prone to autoimmune reactions, and research is now
beginning to prove this.
In addition, autistics have unique metabolic
differences, and difficulty with fighting off certain infections, which then
become chronic and insidious…especially in the gut. Some autistic people have
reported that they feel physically “child like” and that their acute reactions
are like being a “sick child.” Furthermore, our skin and tissue type is often
hyper mobile, soft, and more elastic. I guess this is why many autistics are
now being looked at for Ehlers-Danlos. Is EDS, or is it something similar, but
unique to a proto-autistic genotype?
Most importantly, the current treatments used for
conditions are often no appropriate for autistics. I’m not the only one who’s
had bizarre and negative reactions to medications. Furthermore, even if
medications work for a time, they seem to either lose their effect and/or cause
more damage after awhile. Research on all these matters is so badly needed.
Really, how can we all be so similar if there isn't
in fact an "autistic body type" that the medical science is mostly
overlooking and much of the time, blatantly ignoring into potential danger.
I'm also traumatized because the same thing
happened to my mother, she was unwell for years without any acknowledgement;
she ended up with leukemia.
a human being, and wife, mother, friend, abuse and hardship survivor, trying to
function as a parent, and an ambitious somebody who wants to pursue art,
writing, and leadership/activism...and have a reasonable quality of life. Is
that so much to ask? I want justice, I want closure, I want answers...but how
do I get any answers when I am barred from medical investigation. Written off by
a cruel frame that is simply not the truth.
My health challenges have been as present as eve,
if not more so, in the past year especially. I think it got here from all the
stress of the recent trauma, actually. Before, I was crying about a wolf that
nobody could see it was too far in the distance. Well now, it feels like it's
approaching, but; nobody believes me. It feels frighteningly real that
in this position, I may be in some degree of danger.
All I can hope to do is keep as calm as possible, and
move forward with my endeavors, as well as try and manage as best I can. I will
go back to the herbal college; the students there are very kind, wholeheartedly
support me, and will try to help me out as best they can. It’s my best option,
as of now. Plants can help, they really can.
The system already gives people the short end of
the stick, and many natural clinicians know this. It’s at least refreshing to
have those folks feel the same way as I do, autistic or not.
People already fall through the cracks, as it is,
imagine getting it ten fold when this system possesses detrimentally erroneous
information about you. That may be where I’m at, and at least I do have people
who care and get it recognizing this. I’m not entirely alone
Going to the conventional doctor is difficult,
because this thing is on my public file. I have workers attempt to support me,
as I have to defend myself, and plea my case. They only somewhat help,
for many reasons, some of which are red tape related. However, I may have to enlist
an actual advocate, because I cannot rely on those not allowed to be advocates;
polite diplomacy doesn't work with what is working against me. In retrospect
though, it is so energy draining, so I may only do this if it becomes urgently
The only thing that may effective, in that case,
work would be "Hi, we realize that this individual, who is officially on
the autism spectrum by government standard criteria and thorough testing, has a
misdiagnosis on her file that may cause bias. She is in the process of taking
legal based steps to amend that."
You know, something that really sends the message
just how serious I am, because frankly, it is a serious matter. The word
“legal” is bound to convey that.
I just had an awful experience at an endocrinologist,
and felt like I pretty much lost the opportunity to have my endocrine issues
looked and addressed without biased. The upsetting part was when she admitted
she was influenced by what has been written. She iterated "well, we're not
even sure if you are Asperger’s', seems you have a different problem,
and it's in the system." I was floored, shocked, and instantly very upset inside.
My peer support worker then said "Actually,
she is autistic, this is strongly confirmed by a government support program when
they performed thorough neuropsychological testing" This changed the
doctors' tone a little, though she still remained a little ambivalent. She then
shrugged, and offered an appointment "with a dietician to discuss some
management ideas, for what sounds like it might be a mild blood sugar
imbalance." Once again, I then flew under the radar in terms of discussing
anything further with her.
I shouldn't have to do this, defend myself like
this; on top of making the efforts I do to function via natural therapies and
specific dietary measures. It's just too much. I'm not a superhuman, and one
can only take so much, yet I keep standing somehow.
When I enter the room, the physician may be already
biased. Anything I say may be taken and seen in the light of this report, which
pathologizes my autistically verbose way of communicating. It's actually very
contradictory and ignorant.
If one who understands autism spectrum were to read
the report, they would agree. The thing described my aspie like behavior, and then
sticks it to something else. It’s very absurd. Frankly, anyone with a brain
would read it to be both cruel, and unintelligently ludicrous. The thing even
says I may "manipulate" one on one counselors and advocates. That
part infuriated myself, my friends and family the most, as it’s clearly an
attempt to most violently silence me.
So, if these ignorant doctors think I'm just
"manipulating" advocates and only half listen to them...assuming
they're half-wittedly gulled… they only half listen to even the advocate.
In truth it is they, the doctors believing this
unbelievable garbage who are half-wittedly gulled. Why do they do it? It’s
simply because they take any doctors’ word as gospel, due to hierarchal
ranking. That's it.
Does it matter how inexperienced relating to
autism, unethical, ignorant, insane or abusive a doctor may be? It doesn't seem
I am willing to undergo, and in fact happily
invite, any investigation into the allegations made against me. All that will
come of it is proof that it's not true at all, and is a load of garbage.
I really want to recover this year, and I'm trying hard...but it's hard to
recover from trauma when it keeps perpetuating. It's been excruciating. My
heart and stomach is both hurt and frozen solid some days.
I feel like I'm living in a nightmare right now, to
be honest. I know I have to somehow see the silver lining of somewhere. I'm so
done with hurting over this kind of stuff, I know who I am. However, it's
really not safe, when I'm not getting medical care. I've tried praying about
it, and basically winding up letting it go; writing off any faith I'll get
medical care now or in the nearer future at least.
Ultimately, what kind of care is available for my
issues right now, anyways? Maybe conventional treatments aren't for me, and
it's maybe it’s meant to be like this. I don't react well to most, though I
think that if one can help me (like an immune modulator) it could be worth a
My instinct is going off; there are things in which
may need to be addressed, and may, at some point (hard to say when) become at
least somewhat serious if they don't.
I don't know what specifically, though I have
some vague ideas, which are actually based on my family history as well as past
My rheumatologist has noted I have autoimmune like
symptoms that may go beyond "fibromyalgia." I have a partial marker
for lupus, so he has tested me twice. I
don’t think its lupus per se; I think it’s more complex and odd than just that.
In addition, my body fights it. He may test me again anyway, if he hasn't been
influenced. I don't think he has been, because though he's bold and brash, he
does have a mind of his own. He knows about the report, and he sounded like he
thought it was petty and ignorant.
He's no naturopath lover either, but I don't mind
the guy at all. I’m grateful someone has a mind of their own, in spite of him
admitting that his hands are a little tied.
Ultimately, these people who think otherwise are
misunderstanding the way I communicate. They think I want to "tell
them" what. No, I’m not; I'm merely
being inquisitive...but I'm not even allowed to be.
It's bad enough if any patient is like this, but
with something like this sitting on ones' file, they perpetually frame
themselves just by opening their mouth! They are given baseline testing, as
they have to be given, and when nothing shows up, they do not further
investigate. They are seen as "a waste of time, and a "factitious
and/or psychosomatic." It is so wrong, and it happens to the ones who
question the inadequate system the most.
I’m not the only one this happens to, I can bet it.
I can also bet that the ones who challenge the system, the most, and are
different, take the brunt of this structural violence.
Furthermore, it seems that my children are not
getting taken as seriously either...because of what it says about me. It
says, "Conditions can be a gateway to her to that way with the children
too” In other words, "don't feed into (i.e.. Genuinely address) her
children's' health issues because this can cause her to develop (something
awful.) What?? By the way, I am not the first autistic woman mother to be
accused of such things either. There is actually an advocacy organization in
the UK set up for this matter. I forget the name of it now, but I am definitely
not alone here.
My son was pretty much passed off in genetics, even
though his OT report shows muscle weakness, hyper mobility, and fine/gross
motor difficulties that are quite profound for a child who isn't really that
autistic. Elliot has some aspie-like traits, and ADD features for certain, but
my younger son is not autistic.
I don't know what he is exactly, like me; he very
much does not fit into any box at all. Unlike me though, he doesn't struggle as
much socially, though he can be mildly idiosyncratic and quirky (but not enough
for kids to be put off.) Sociability comes more naturally to him, I always had
to "think about it and contrive it" before I would step in the water.
He doesn't seem to have that, though he has other aspects of autism spectrum.
What concerns me about Elliot is more his physical
health, because I see things about him that concern me, his soft tissues, his
bendy-ness, his easy bruising, his body pains that seem a bit extreme, his
susceptibility to burn out/losing stamina, and sensitive tummy. It is slight
though, not major. So I guess it should be left alone for now. The system isn’t
preventative anyway. I’ve taken it upon myself to enroll him in dance. It’s
just that, he does have the mild EDS traits, he was the one referred by the
pediatrician, and yet he wasn't given more than a 5 minute, evaluation and
because his traits weren't "screaming out" in severity, it was passed
The kid does have sensitivities, he has always had.
I won’t elaborate, and I see the point of not making a huge fuss about it to
him especially. However, as a mother, this both sickens and infuriates me
coming from the angle of untrue things that are written, affecting him. If I
could say one thing to that awful woman psychiatrist, it'd be "effectively
blacklisting a six year old child takes your already obscene structurally
violent antics to a whole new low!"
I don't want to have
Ehlers-Danlos, and I don't want him to have it or anything else we might have
instead. I'm not somehow getting off on wanting to have it, or for my family to
have it. My kids have me genes and I can certainly see that. Early intervention
is so much better for EDS and other collagen/soft connective tissue disorders,
so the kid can get the OT and physic to develop muscles better and thus injure
less. Like I said, ballet is good.
I am too angry to go back to my GP, so it’s time to
find a new one…but how of course. There is a massive shortage, and it’s very
hard to find a good one. I feel that the relationship with my GP, which went
awry, may have spiraled into what happened. I feel it was he who "assisted" my
ending up in that position in the first place, by giving his “feedback” on his
experience with me.
The long story short; the guy never believed me or
interpreted me properly. It was three years of hell, and I don't doubt he may
have shared what he thought of me, which influenced what then got written.
That's my instinct, but I have no proof though.
I am not just being paranoid, many of these things
are really happening in some way of another. My father is a former lawyer, he’s
seen it all, and he knows full well how these people “circle the wagons” in
ways unfair to the patient. It's just hard for me to pinpoint specifically when
and especially where, once again.
I have strong intuition, but still I have social
"blind spot" areas versus my instinctual savants. It is a scary paradox
to have to endure. I had been right all along, and it was confirmed in the
endocrinology appointment. That confirmation was very upsetting and horrific,
actually. I found that my "imagination" was real when, in that
I tried to say "it's my Asperger’s' that has
me explain things in this way" again, her verbal response was "we're
not even sure if you have Asperger’s' that's what the psychiatrist said on you
file and it's in the public system." So my instincts wereright,
and Iwasn't being paranoid after all. I was trying to tell
myself to “chill out, it couldn’t be that bad…and so were others… but here we
were, it’s true.” It took me days to recover form this shock.
Being falsely accused and wrongfully understood
feels awful. I watched my mom nearly die of cancer when I was 14... after not
being believed, and being badly misunderstood in her attempts to describe her
ailments, for years of feeling unwell. She had a bone marrow transplant in
2001, and is alive today because of it. That was very lucky though. She was
almost to be transferred to hospice, when they found that match. She dealt with
what may have been FMS for years before then. She had many similar issues to
what I have now. How would this not affect me?
What this woman wrote about me, in lieu of that,
was really mean and cruel. It nearly broke me apart. I was already afraid of
not being believed, hence over explaining myself. All I was asking for was
compassion and help for chronic pain. People don’t know how to read between the
lines, when autistic people try to communicatively ask for help. This is the problem;
these clinicians do not understand the quirks and differences involved in how
autistic people communicate.