pretty as a picture

Posted by: Sarah Trost in Aspies, autism/asperger's, Being Mommy, Family No Comments »

My girls always make the funniest faces (unintentionally) in their
photographs. I’ve tried having them practice in front of a mirror and it just
doesn’t work. So now this is what I do:

I tell them to close their eyes. When their face looks calm and relaxed I tell
them to think of (an ice cream sunday, their favorite video game, whatever you
can think of that will bring a smile to their faces.) When I see that natural
smile I get ready to snap the picture and then I tell them to open their eyes.
Perfect picture almost every time!

an aspie son interviews mom

Posted by: Sarah Trost in Aspies, autism/asperger's, Being Mommy, Family, Homeschooling No Comments »

Change is not always good

Posted by: Sarah Trost in Aspies, health No Comments »

http://news.yahoo.com/s/ap/20100210/ap_on_he_me/us_med_mental_disorders

Changes proposed in how psychiatrists diagnose

WASHINGTON – Don’t say “mental retardation” — the new term is “intellectual disability.” No more diagnoses of Asperger’s syndrome — call it a mild version of autism instead. And while “behavioral addictions” will be new to doctors’ dictionaries, “Internet addiction” didn’t make the cut.

The American Psychiatric Association is proposing major changes Wednesday to its diagnostic bible, the manual that doctors, insurers and scientists use in deciding what’s officially a mental disorder and what symptoms to treat. In a new twist, it is seeking feedback via the Internet from both psychiatrists and the general public about whether the changes will be helpful before finalizing them.

The manual suggests some new diagnoses. Gambling so far is the lone identified behavioral addiction, but in the new category of learning disabilities are problems with both reading and math. Also new is binge eating, distinct from bulimia because the binge eaters don’t purge.

Sure to generate debate, the draft also proposes diagnosing people as being at high risk of developing some serious mental disorders — such as dementia or schizophrenia — based on early symptoms, even though there’s no way to know who will worsen into full-blown illness. It’s a category the psychiatrist group’s own leaders say must be used with caution, as scientists don’t yet have treatments to lower that risk but also don’t want to miss people on the cusp of needing care.

Another change: The draft sets scales to estimate both adults and teens most at risk of suicide, stressing that suicide occurs with numerous mental illnesses, not just depression.

But overall the manual’s biggest changes eliminate diagnoses that it contends are essentially subtypes of broader illnesses — and urge doctors to concentrate more on the severity of their patients’ symptoms. Thus the draft sets “autism spectrum disorders” as the diagnosis that encompasses a full range of autistic brain conditions — from mild social impairment to more severe autism’s lack of eye contact, repetitive behavior and poor communication — instead of differentiating between the terms autism, Asperger’s or “pervasive developmental disorder” as doctors do today.

The psychiatric group expects that overarching change could actually lower the numbers of people thought to suffer from mental disorders.

“Is someone really a patient, or just meets some criteria like trouble sleeping?” APA President Dr. Alan Schatzberg, a Stanford University psychiatry professor, told The Associated Press. “It’s really important for us as a field to try not to overdiagnose.”

Psychiatry has been accused of overdiagnosis in recent years as prescriptions for antidepressants, stimulants and other medications have soared. So the update of this manual called the DSM-5 — the Diagnostic and Statistical Manual of Mental Disorders, fifth edition — has been anxiously awaited. It’s the first update since 1994, and brain research during that time period has soared. That work is key to give scientists new insight into mental disorders with underlying causes that often are a mystery and that cannot be diagnosed with, say, a blood test or X-ray.

“The field is still trying to organize valid diagnostic categories. It’s honest to re-look at what the science says and doesn’t say periodically,” said Ken Duckworth, medical director for the National Alliance for the Mentally Ill, which was gearing up to evaluate the draft.

The draft manual, posted at http://www.DSM5.org, is up for public debate through April, and it’s expected to be lively. Among the autism community especially, terminology is considered key to describing a set of poorly understood conditions. People with Asperger’s syndrome, for instance, tend to function poorly socially but be high-achieving academically and verbally, while verbal problems are often a feature of other forms of autism.

“It’s really important to recognize that diagnostic labels very much can be a part of one’s identity,” said Geri Dawson of the advocacy group Autism Speaks, which plans to take no stand on the autism revisions. “People will have an emotional reaction to this.”

Liane Holliday Willey, an author of books about Asperger’s who also has the condition, said in an e-mail that school autism services often are geared to help lower-functioning children.

“I cannot fathom how anyone could even imagine they are one and the same,” she wrote. “If I had put my daughter who has a high IQ and solid verbal skills in the autism program, her self-esteem, intelligence and academic progress would have shut down.”

Terminology also reflects cultural sensitivities. Most patient-advocacy groups already have adopted the term “intellectual disability” in place of “mental retardation.” Just this month, the White House chief of staff, Rahm Emanuel, drew criticism from former GOP vice presidential nominee Sarah Palin and others for using the word “retarded” to describe some activists whose tactics he questioned. He later apologized.

___

AP Medical Writer Lindsey Tanner in Chicago contributed to this report.

Act Now!!

Posted by: Sarah Trost in Aspies, Being Mommy, health, Today in the News No Comments »

As many of you may know, they have been working on updating the DSM-IV, and had talked of putting Asperger Syndrome and PDD under the ASD umbrella diagnosis. Well, that had a good possibility of helping more aspies and those diagnosed with PDD, although perhaps confusing the lay people who really don’t know much about ASDs.

They are definitely doing such, but I’m now afraid that the change is actually going to hurt those with AS and PDD and perhaps even those who have classic ASD tremendously. The reason is because the diagnostic criteria is possibly being narrowed so much that the number of those diagnosed in the future will be much fewer and those currently diagnosed may loose their diagnosis. Fewer diagnosed means fewer will receive help that they may desperately need in school, with health and psychiatric care, and other services provided through private and state programs.

In the DSM-IV the diagnostic criteria for AS currently says

Asperger’s Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

The new proposed revision/criteria for DSM-V will say

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction: (and what determines that something IS a ‘marked deficit?” People can be very flexible and learn, even those on the autism spectrum.)

b. Lack of social reciprocity; (so, if you can take turns in a game or conversation, you aren’t autistic?)

c. Failure to develop and maintain peer relationships appropriate to developmental level (does that mean that if you have a friend you aren’t autistic?)

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Condensing the criteria may make things simpler, but it certainly excludes many who are on the spectrum. This is horrible! Something should be done! And something can be done, they are asking for comments on the proposals. I know of no other time when health care professionals have actually asked for the public to give such input, so I’m hoping that people will do so in the droves.

If you have the time and inclination, please do say that while including AS and PDD under ASDs, limiting the diagnostic criteria so severely will seriously harm those on the spectrum who may be undiagnosed and possibly even those who have already been diagnosed and limit the amount of help they will receive. You will need to register but it was simple and then you can comment here

Raising a large family with disabilities

Posted by: Sarah Trost in Aspies, Being Mommy, doctrine and Biblical truths, health, Sovereignty of God No Comments »

I won’t fake it.  It’s not easy being a mom who is also autistic.  It’s even harder being a mom who is autistic and raising children who are on the autism spectrum.  Add to that a mom who is autistic, married to a man with cancer and undergoing chemotherapy, raising children on the autism spectrum, while undergoing miscarriages and surgeries.

Yet, I find joy in serving my family.  Not always.  I do grumble occasionally.  But I love my family immesly.

I realize that my husband would likely do better with a wife that is more self sufficient.  After all, I can’t seem to remember to brush my teeth or take my vitamins without his pokes.   But he loves me and doesn’t seem to mind (most of the time) helping me in my disabilities.  His feelings aren’t hurt when I tell him I can’t handle being touched that day.  He notices when I am overwhelmed and need some time in a quiet space (who doesn’t need that, even without a disability!)

I so desire the ability to give him a perfectly orderly and quiet environment where he can recover and heal.  I’m sure he desires that as well, yet, he recognizes that I have some limitations.

Not only do I feel that I fail my husband in certain areas, but I think I fail my children.  I can’t seem to find a way to rally them up and get them to joyfully and willingly obey.

Still, I am pleased with God’s direction and immeasurable strength and peace He has provided me.  Not that I always illuminate with peace, mind you, but it is there for the taking.

For instance, God directed us towards the gluten free diet.  Our lives are completely different thanks to this ‘simple’ change in diet!  I find that tea has helped give me some calm during the crazy parts of the day like after lunch and dinner, and seems to be helping Paul as well.  Most of all, a grasp of God’s sovereignty carries us through any trial that comes our way.  Again, not that we always react in faith!  But God is unboundingly merciful to us in such times of distress.  Ultimately, we have peace in the midst of a raging storm.

ZZZZZZZZZZZZZ

Posted by: Sarah Trost in Aspies, Being Mommy, Family No Comments »

Ever since Baby Joy had her six month shots she’s been sick. She was sick following her four month shots, but she did recover. This time she had the flu shot as well, but I only let them give half of the other vaccines and said I would return in a month for the other half of the flu shot and the rest of the vaccinations.

Well, she got very sick that night and was sick for at least 72 hours (as opposed to the usual 24-48.) She was OK for one day and then got sick again (another set of symptoms.) I took her to the DR when she didn’t get better and they said she had the flu. They denied it was caused by the vaccine. A few days later she broke out in a rash all over her body. They started blistering. It was Saturday now so I didn’t take her to the DR, but by Monday she was better. She had two days of wellness, then got sick again. I did take her to the DR who again said it had nothing to do with the shots and sent us home (but tried to convince me to give the other half the flu shot and the rest of the missing vaccines even though she was sick!)

Now she has a virus- fever for four days and hasn’t slept. yesterday she was up 12 hours even though she had a poor night’s sleep previously. And I am so exhausted and sore and just want to sleep! Of course I refused that second series of shots and am finding a new pediatrician. That one is too far and too expensive and doesn’t have hospital privileges anyway. My plan is to not give her the vaccines anymore until perhaps two years old. That’s not going to go over too well I’m afraid.