Tag Archives: diagnosis

Tendencies, Traits, Talents: Aspergirls

26 Mar

Below is a link to an excellent list of characteristics, abilities, and talents of females with Asperger’s Syndrome.  This doesn’t, and shouldn’t, serve as diagnostic criteria or as a rigid checklist.  It is, however, a wonderful start to a female profile that may guide identification and disgnosis someday.  Some people have told me, “You can’t have Asperger’s! You are a girl!”  I’m not the only Aspie female who has heard that, or some variant of disbelief regarding this very specific label many of us have struggled whole lifetimes to locate, so we can access the tools we need, so we can be understood, so we can understand…

Well, like many myths and stereotypes, this one is unfortunately heard quite frequently by women, girls, and parents who are looking for answers so that they can find the information and tools to be the best they can be and lead fulfilling lives.  I don’t think females are less likely to have Asperger’s or be Autistic, but I do know firsthand that many of us are not identified in a timely fashion.  Of course, I also saw myth and stereotype delay my son’s diagnosis, so it’s not isolated to one gender but I do think it’s more prevalent for a few reasons (these are written with more of a focus on parents and children, but can apply to an adult as well. I did not include tailored descriptions below, for ease of reading.)

1. Perpetuation of Stereotype/Myth

2.  Inadequate updating/continuing education of professionals who provide triage to those inquiring with concerns about their child’s development.

3.  Some behavior typically described as “autistic” is more acceptable (historically) in girls than boys.  Thankfully this is changing, but the remnants of “ye olde gender stereotypes” still hang about like a thick, slippery fog.

4.  Lack of mindfulness & dismissal of parental concerns, by professionals, because of the perception that a simple, casual inquiry equates to the parent being a stifling, growth suppressing “helicopter parent”.  I’ve known a few moms who were scolded by their physicians for just asking questions about autism and their child.  It’s like the obsession with healthy parenting and healthy development and the concerns about “hovering”, perpetuated by those tireless soldiers of the mommy-wars, has become more of a concern to professionals than identifying legitimate concerns and addressing them in a mindful manner.   I worry that the obsession about “over parenting” does damage to first time parents and children.  We are all trying to figure it out.  We are all works in progress.  I think those that under parent and neglect their children are a greater worry, but it’s easier to criticize the parent that actually comes into the office with a concern than the one who doesn’t bring their child in and who doesn’t share their concerns with the physician.

It just worries me, bothers me, angers me, that one can still go to a specialist who will look at your child and say “but your kid doesn’t act like Rainman!”…  I’ve brought prints of the diagnostic criteria with us to educate where we find outdated information.  I do what I can.  I do this because I hear all too often of delayed diagnosis, missed disgnosis, and parents who won’t let the label be given because of myths, stereotypes, and misperceptions about what it means to be Autistic, in this era, in this country, and in our society.

We all need to stand up and spread the truth about autism, about autistics, about parenting autistics.  One extremely vital component of that is  the different ways certain traits manifest differently in males and females.

Click to go to Tania Ann Marshall’s fantastic “Moving Towards A Female Profile: The Unique Characteristics”, Abilities and Talents of Young Girls with Asperger Syndrome.

For a fantastic read on Aspergirls, please check out Rudy Simone’s “Aspergirls” at Amazon.com.  As an adult female Aspie, I found the book to be very helpful in understanding our inherent strengths.  It does offer suggestions for Aspergirls and their parents.  There is also a list which Tania Ann Marshall’s list reminded me of.  Rudy Simone’s list is more a chart comparing manifestations of traits in males and in females.

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The Event.

2 Oct

In my last post about my challenge in getting my rheumatoid arthritis under control, I announced that I was stopping methotrexate and continuing on with the Plaquenil…

Well, that lasted around four weeks.

Four weeks off the methotrexate and BAM!  Labs went zooming back up, way past my previous levels of inflammation… The pain got much worse, my eyes got all blurry and irritated again.  So I went in for my RA visit and the doc asked how I was doing.  I reminded him that I had stopped the methotrexate and he said “You mean that you stopped the Plaquenil, right?”  and I corrected him…  As it turns out, my labs turned up something interesting.  Ok, interesting really isn’t the right word.  As it turns out, my labs were the first step in what would become a monumental event.  Perhaps you have seen commercials for it on NBC.  It’s called “The Event”.

Yes. I am joking about the NBC thing.

My monumental event, or rather series of monumental events, are bigger than that show (though I must confess, I am enjoying NBC’s “The Event”) and the impact of the discovery that was made through that one little blood test has changed my life, and my family’s life, forever.

The little blood test was for a G6PD level and my rheumatologist tacked it onto my usual blood work as he had recently started me on Plaquenil.   When I had the test, and when he informed me that I had to stop the Plaquenil immediately because I have G6PD deficiency, I will admit that I knew next to nothing about G6PD deficiency.  All I knew was to stop the Plaquenil.  He wanted to start me on Cimzia immediately so that I would hopefully see some relief from my RA symptoms (which were totally kicking my butt as far as fatigue and pain go).  I mentioned that I have a swollen lymph node and he called off the Cimzia and told me to see my primary or a surgeon to have it biopsied in case it is a lymphoma.

A lymphoma?  No panic. RA puts me at a higher risk for developing lymphoma.  So I called my primary doc when I got home and they saw me within the hour… I gave them copies of my labs, pointed out the G6PD stuff, and left with a course of antibiotics to see if the swollen bit was an infection or if we had to go cutting me up.

A few days in and I felt like crap…Shortness of breath, more fatigue… I read up and that is when I started to learn the truth about G6PD deficiency and how much of my life it had already impacted and how to prevent further near-death, permanent damage causing experiences.

I learned, in that first week, that I would have to educate my primary care doctor, as in that very first day he prescribed an antibiotic that is contraindicated in people with G6PD deficiency.  They did prescribe a new antibiotic, and the swelling did decrease and nobody seems concerned about it anymore.  I should be starting Cimzia as soon as the insurance approves it for self-injection (they did approve it for injection by a nurse, but they would only allow it if I went to a cancer center 45 minutes from here… HA!)

Little did I know, in that first week, that this one little enzyme wasn’t just a key player in the functioning of the human body, and why mine had malfunctioned so many times along the way, but my sudden, new awareness of it would save a life, potentially save other lives, and bring a confusing and abrupt end to an important relationship, that has brought me clarity, as painful and perplexing as it is to accept that.

So we have been having more drama than any TV program… And in the next few entries I will share the mystery, the miracle, the pain, and the triumph.

For now though, I must sleep.

xo

Bek

There is a Methotrexate to My Madness.

7 May

I have Rheumatoid Arthritis.  I had wondered about this for some time, but received confirmation on Wednesday when I went to the Rheumatologist.   Nobody will ever know how long I have had RA, but my guess is that it started before my parathyroid drama a few years ago.  Over the years since then (4 years) I assumed the aches were from my osteoarthritis (which is “wear and tear” arthritis) or from my bones healing from the extensive osteoporosis from having a parathyroid tumor the size of half a large banana making all body functions worthy of specialists visits and over 20 prescriptions.

When my left hip joint showed up fairly damaged, with bone cysts, and effusion the ortho doc was stumped. How could I have this degree of damage out of nowhere.  I stayed in bed (though even being flat or sitting supported hurt like hell, the pain tired me out, so I figured I’d be more efficient about falling apart and camp out in comfort), I used a cane, I did as many physical therapy visits as my insurance would allow me.  I was desperately trying to avoid a hip replacement, as to me, this out of nowhere pain and stiffness was probably something not as cut and dry as wear and tear.  All of us were stumped when the right hip pulled the same crap.

My hands would claw up and spasm.  I wondered if the boys should wear protective eyewear and hard hats while I made what jewelry I could at the kitchen table when I could get out of bed without so many meds that I was rendered goofy.   I bought a good office chair (a Mirra), started having more symptoms.

In October the rest of my joints jumped in.  Hands stiff and hurting.  Elbows hurt even just being still.

I tried taking my pain pills but nothing helped. They did make me so silly that I just didn’t care about the pain so much. Which sometimes, is the only way to go.  But nothing really helped, because the problem is inflammation (my body seems to be bombing itself), and I can’t take NSAIDS due to allergy.

So here I am.  Finally I have something other than pain and sadness (not self-pity but rather a desperate sadness that I felt that I could not help Alex as much as he needed me to) at my core, and that is hope.  My bones, my joints, my heart, my brain, my soul are beaming with hope.  I cannot be sad about this newest diagnosis, because it is an answer to a heavily looming question, it’s a major release of worry, it’s the removal of the blinders so I am allowed to look toward the future beyond just the next few minutes.

I have been through diagnosis of major illness/conditions/injury before, and I am familiar with the emotional and cognitive process I go through (I guess I am a creature of habit), but this time the one that stands out is anger.  Not at my body, not at the disease, not at medication, and not even at my lack of health insurance.  My anger is that in my time of need, when I spoke up and said “no” to demands of other people, due to my health issues, I have never been given the respect I  (and any human) deserve. I have been hated on for saying no and offering alternatives to people when I couldn’t come forward and offer a place to stay, or drive, but still they festered.  They knew of the health issues, they knew that they were debilitating as far back as my pregnancy with Alex, but they chose ignorance for their own needs. I was reading Chronic Babe yesterday and there was a great article on this sort of thing, and I think I just need to purge the negativity of others, even family, completely from my mind and body.  Some days I wish I had that mind-erase gadget from Men in Black, other days that island in the middle of nowhere (with UPS delivery and wifi to handle my med orders and amazon.com deliveries) seems grand.

Anyway, I just took my first dose of Methotrexate.  Cheers!  Here’s to the future!

xo

Bek

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This is AWESOME!

17 Mar

I la-la-la love this.

Thanks AANE for sharing this link!

From WGBH’s press release:

Episode #1306
When Carl Met George
George is excited about spending time with his new friend, Carl, who loves to draw trains and
knows all kinds of cool facts about them!  George discovers that Carl has Asperger’s Syndrome,
a form of autism, and that Carl sees the world a bit differently than George and many kids.
Despite their differences, George and Carl become great pals – and learn a lot from each other.

The full episode, When Carl Met George, premiers on April 5th! Be sure to check your local listings!

xo

Bek

Autism & Testing 1-2-3…

21 Oct

Originally uploaded by CleverIndie

This is from our local Autism Speaks’ Facebook page:
***Please note that the Care Mobile will also be at the Autism Speaks SWFL Walk Now for Autism on November 7 at Estero Community Park*****

The Children’s Hospital of Southwest Florida, in partnership with the Ronald McDonald House Charities of Southwest Florida, will offer free monthly autism spectrum disorder screening for toddlers 18 months to 36 months of age.

The first screening will be held Nov. 6 from 9:30 a.m. to 2 p.m. in the Ronald McDonald Care Mobile, located in the Cape Coral Hospital parking lot. Additional screenings will be conducted monthly at different locations across Lee County.

It is estimated that one in every 150 children is diagnosed with some form of ASD, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

That’s why parents are encouraged to bring their toddlers to the Ronald McDonald Care Mobile for a free screening. Clinicians will use the M-CHAT, with Denver Developmental Screening Tool to assess the toddlers. The screening is not intended to make a definitive ASD diagnosis, but rather to determine whether your child may be at risk and needs further evaluation.

Medical consultants for the project stress that an early diagnosis can make a vast difference for toddlers and their families. They say early intensive behavioral intervention, or EIBI, can make an immense difference not just in the development of the child, but in their families as well.

The ASD screening is conducted by the Neurosciences Center at TCH, under the guidance of pediatric neurologist Jose Colon, MD, MPH, and pediatric psychiatrist Marianne Krouk, DO. The onsite screenings will be administered by an Advanced Registered Nurse Practitioner, who has extensive training and experience in typical child development and developmental disorders.

A physician referral is not required. To schedule a screening, please call 239-985-3608.”

If you have any concerns, I’d make an appointment. For those who think that a pediatrician would have mentioned something during the annual checkup, I wouldn’t put all of my trust in that, though it is getting better. Remember, getting clarification and help for you and your child, is the best thing for your kid and their future, and the earlier, the better.

Just wanted to share….Hope this helps someone…
xo
Bek

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