Tuesday, June 28, 2016

Brain MRIs, Brain Damage & Intellectual Disabilites

A question from one of my commenters is worth a post of it's own because I've asked the same thing.

"How did they determine she is not autistic? We had our daughter's brain MRI done a few weeks ago and it came back normal. No brain damage or injury. I was shocked!!"

First, I'll address the MRI part of the question. Sissy and Jie Jie's brain MRI also showed normal brain structure except for a slight thinning of the corpus colosum in Sissy's brain.

"MRI can be used to diagnose disorders that cause changes in the brain such as bleeding, alterations in brain tissue or structure such as brain swelling and infiltrative disorders such as inflammation or brain tumors.

MRI can be used to diagnose stroke, which occurs when blood flow to the brain stops. Two major types of strokes are ischemic, caused by a lack of oxygen reaching brain tissue due to artery narrowing or blockage, and hemorrhagic, caused by a broken vein or artery. MRI is especially useful in diagnosing ischemic strokes, because they are more subtle and need the higher resolution to view them. Magnetic resonance imaging with angiography, or MRA, can be useful in diagnosing brain aneurysms, weak areas of arteries that bulge out like balloons and can cause strokes or other complications. MRI does not reveal fresh blood as well as computed tomography, or CT, scans do, and often both are used to diagnose hemorrhagic strokes.

MRI scans are often used to help diagnose abnormalities in the brain, such as birth defects, developmental deformities, damage caused by medical procedures, or cerebral palsy, and these scans can reveal either large or very minute brain changes. MRI scans can also be used to diagnose the effects of a traumatic brain injury, or TBI, on brain tissue. MRI can pick up subtle changes caused by the injury, such as very tiny areas of damage or bleeding.

MRI can be useful in diagnosing brain cysts and tumors, especially very small ones or those that are in areas that other imaging techniques like CT scan cannot visualize well. Sometimes a special dye may be injected into the brain before the MRI to help view differences in the adjacent areas of brain tissue.

MRI is superior to other forms of imaging for diagnosing certain brain infections or conditions that result in inflammation of the blood vessels called vasculitis. MRI also can reveal brain abscesses, collections of pus in the brain due to infection or injury. MRI is very important in the diagnosis of multiple sclerosis and can detect the condition in up to 95 percent of the people who have it because of its ability to detect subtle changes in brain tissue. MRI can be quite useful in helping diagnosing hormonal disorders that affect the brain, such as pituitary problems or Cushing syndrome."

An MRI cannot diagnose mental illness or, as in Jie Jie's case, intellectual disability caused by genetic conditions. MRI doesn't show why any of my three older daughters are intellectually disabled. In Jie Jie's case, changes in her genes make her cells unable to do the job they were supposed to do or cause them not to work at all. No one knows the cause of Sissy's or Blossom's disabilities.

As for austism, there are many, many symptoms and characteristics of autism and Sissy had a ton of them, but she didn't have the main ones. In order to be diagnosed with autism, she needed to exhibit at least two of the following: an obsession with something that she couldn't control, OCD such as lining things up a certain way and tantrums if someone interfered, repetitive muscle movements such as hand flapping, echolalia (repeating the same words or sounds several times in a row - the frequency of repetition is key here because Sissy repeats things a lot, but not like a person with autism apparently does), and not knowing they are doing something and not being able to stop it, like escaping/wandering/eloping, they just won't have an awareness of it, won't plan it, etc...

Sissy has ALL BUT ONE of the social symptoms of autism, and many of the developmental symptoms such as speech impairment, she even repeats things and has OCD tendencies, but they aren't to the extreme that a person with autism tends to do them, therefore, the doctors concluded she didn't have autism. The hardest thing to hear was that "she has insight" into her escaping. I heard the word insight and thought the doctor was crazy, because Sissy isn't insightful about anything at all, but in a clinical sense, insight means awareness. She is aware that she is escaping and she even plans it, she even says she knows it's wrong and dangerous. The big question, though, is how much is she repeating what everyone has said to her about it, hence her saying, "I know it's dangerous. I know it's wrong." But, one cannot dismiss the fact that she does plan it and a person with autism who wanders (the terms for someone who leaves safety without awareness) cannot plan it.

All this said, however, there is something else that I learned. Boys have autism more than girls and girls are often misdiagnosed for years and years and years because their symptoms present differently than boys.

Like many other conditions, autism shares symptoms with other conditions. For example, let's look at vomiting. We vomit for many reasons - flu, food poisoning, pregnancy, over eating, motion sickness, etc. Same with headaches, there are many reasons from being dehydrated to having a brain tumor. Sissy's autism-like symptoms are being chalked up to her developmental delays. Remember, developmental delay means that something didn't develop. Will a newborn baby's brain show a defect just because certain centers of the brain haven't developed yet? No, just like Sissy's brain didn't show a defect where her brain failed to develop. Science just can't see certain things and the brain is still a huge mystery.


Anonymous said...

Wow, I would invite you to read some of the very recent research on diagnosis of autism. There is incredible gender bias in this field, as the lists of symptoms were compiled from studying boys, and it manifests differently in girls.

There was recently an article in Scientific American detailing some of the research, and in fact, discussing the very things that kept her from the diagnosis!

Even WebMD says girls with autism don't have the repetitive behaviors.

Anonymous said...

Autism can be really hard to diagnose in girls. Sissy may or may not have it, but I wouldn't take this initial decision that she doesn't have it as final. My daughter's OCD does not manifest in the typical ways that it does in other children. Hers shows in her brain's need to hear the answers to repetitive questions over and over. Especially answers that are "positive" to her. She is 20 years old now, and it took quite a few years before this became evident. Now when I ask her why she repeats questions so many times even though she knows it annoys people, she simply states, "My brain wants to hear the answer in a specific way. I need to hear it nicely, not irritated." Her brain just won't let it go until she hears the answer the way she needs to hear it. Or a specific number of times. She is completely aware she is doing it, but she is compelled to do it. And she can get pretty forceful if people will not answer the questions repeatedly. She has real difficulty stopping herself.

Same with other "wrong" actions. She is aware that what she is doing is breaking social rules, but she is compelled to complete the action in order for her brain to let it go. She could teach about autism just like Temple Grandin, but she is helpless to make changes in her own behavior needs. The therapists who work with her love her because she is so interesting to work with. She is completely aware of her repetitive questions and actions, eating obsessions, and other annoying behaviors as well as the affect they have on others. She wishes she was different, but she knows she is wired differently and therefore thinks differently. It would be nice if the behaviors weren't annoying to others because she would be accepted by peers more easily. Most social situations don't work out well for her.

Good luck to you as you continue on this journey with Sissy. You are to be commended for your diligence and determination.

Karen said...

Thanks so much for the information. Our doctor's office doesn't offer explanations or I'm just not asking the right questions! ;)
Parenting a child with intellectual disability is so much harder than I could have ever imagined.

sarah said...

You are right about girls and autism. They so often go undiagnosed. My daighter who is 7 has high functioning autism. She will repeat things that other kids say on social situations and she says it because she cant think of anythinf else to say and wants to talk to them. So for her at least its difficulty formulating/conveying her own thoughts but wanting to interact if that makes sense. I am working with her on what things she needs to think in her head and what she needs to say out loud. So for instance she she back talks me i tell her that she needs to think that in her head instead for saying it outloud.
Regardless of whether Sissy has autism or not, it sounds like she could benefit from a behavior therapist (aba) to help her and you with some of these issues. Our aba therapist has made huge progress with my daughter and honestly i think she takes it better from someone other than me.

Good luck to you. Im sure your overwhelmed...praying things get easier soo