Father’s age is linked to rise in Autism

 Autism, Causes, Children  Comments Off on Father’s age is linked to rise in Autism
Aug 232012
 

According to results from a study reported yesterday, a father’s age is linked to the possible development of Autism.  Below is an excerpt from the article discussing this from the NY Times:

“Older men are more likely than young ones to father a child who develops autism or schizophrenia, because of random mutations that become more numerous with advancing paternal age, scientists reported on Wednesday, in the first study to quantify the effect as it builds each year. The age of mothers had no bearing on the risk for these disorders, the study found.

Experts said that the finding was hardly reason to forgo fatherhood later in life, though it might have some influence on reproductive decisions. The overall risk to a man in his 40s or older is in the range of 2 percent, at most, and there are other contributing biological factors that are entirely unknown.

But the study, published online in the journal Nature, provides support for the argument that the surging rate of autism diagnoses over recent decades is attributable in part to the increasing average age of fathers, which could account for as many as 20 to 30 percent of cases.

The findings also counter the longstanding assumption that the age of the mother is the most important factor in determining the odds of a child having developmental problems. The risk of chromosomal abnormalities, like Down syndrome, increases for older mothers, but when it comes to some complex developmental and psychiatric problems, the lion’s share of the genetic risk originates in the sperm, not the egg, the study found.

Previous studies had strongly suggested as much, including an analysis published in April that found that this risk was higher at age 35 than 25 and crept up with age. The new report quantifies that risk for the first time, calculating how much it accumulates each year.

The research team found that the average child born to a 20-year-old father had 25 random mutations that could be traced to paternal genetic material. The number increased steadily by two mutations a year, reaching 65 mutations for offspring of 40-year-old men.”

HF Autism/Aspergers clarifications

 Autism, Causes, Children  Comments Off on HF Autism/Aspergers clarifications
Aug 232012
 

There is a lot of confusion about autism and its symptoms.  Parents aren’t sure what to look for as indicators and educators aren’t generally trained to know the different signs at different levels of the spectrum.  There is a saying within the autism community:  “When you know one child with autism, you know one child with autism.”

Following is one description, that may not seem typical, that describes symptoms that my 3 year-old has displayed:

  • “A general lack of fear or fearlessness may be evident, and children with autism may talk openly with strangers, hug strangers, invade people’s personal space, bump into peers in lines, touch or climb people inappropriately, or have excessive or a complete lack of separation anxiety from parents or caregivers (Mayes, 2008).”
    • My daughter has shown a complete lack of separation anxiety, has shown inappropriate fearlessness (making my heart pound at playgrounds), and has been inappropriately open with strangers.  Other signs that match my daughter and teen son, but don’t seem obvious, include:
  • An extreme perfectionism or “having to finish” what they have started, to the point of tantrums, may be evident especially during unexpected or unwanted transitions (Mayes, 2008).
  • They may have problems falling asleep, or staying asleep.
  • Children who are overly reactive to crowds and commotion may appear uncomfortable or avoidant of cafeterias, malls, gymnasiums, parties, family gatherings or even theaters (Mayes, 2008)
  • Communication may not appear to be delayed, but comprehension, social language requiring give and take may be lacking, an unusual tone or quality, rote or repetitive speech may present.
  • Blurting out, excessively asking the same question over and over, echoing or mimicking, large vocabulary, or difficulty listening to another and understanding another perspective can be apparent.
  • Some people with high functioning autism or Asperger’s Syndrome demonstrate extreme abilities in remembering facts, numbers, phone numbers, maps, words, birth dates, or other factual information.
    • I’ve seen this in both my kids.  The other day, my 3 year-old commented on a boy she saw at my son’s school as being his friend after only briefly seeing him with my son the previous day, surrounded by many children.
  • They may appear very rigid in their point of view, and unable to accept or understand another’s perspective. They may appear to never be able to “let it go,” or tend towards appearing argumentative or “splitting hairs.” A conversation can lead to tantrums, emotional meltdowns, or withdrawal with seemingly little provocation (Fattig, 2007).
    • This describes some interactions with my 14 year-old son diagnosed with Aspergers, who can be very argumentative and “split hairs.”  My 3 year-old can have a melt-down at the slightest suggestion of things possibly not going her way or how she expected.   Many times she is wrong – she doesn’t know that for instance, I am in the process of getting the remote to turn on her show…
  • Motor clumsiness or fine motor difficulties may be present, and intuitive physics may be higher than intuitive psycho/social abilities (Baron-Cohen, 2000), p. 16). A child may be able to dismantle and recreate elaborate lego designs, set a clock, reprogram a VCR, match shapes, or display, artistic or musical talents (Mayes, 2008, p. 2). ” Fathers of children with autism, as well as grandfathers, are over-represented in occupations such as engineering, whilst being under-represented in occupations such as social work.  Engineering is a clear example of an occupation that requires good folk (intuitive) physics,” (Baron-Cohen, 2000, p. 16).
    • Both of my children have struggled with clumsiness.  It was considered it may be due to their height – both 90-100%.  My son broke his arm when he was 2 after climbing a chair to switch lights on and off (a symptom, which I didn’t know then) and slipped, falling wrong on his arm.  He would fall while standing in line.  More recently, he has had concussions from soccer.  My daughter has regular band-aids after falls from walking and not looking where she is walking.
    • My teen son wants to be an engineer.  My father was an engineer.
  • Children with high functioning autism or Asperger’s Syndrome are “limited in brain areas that enable people to understand subtle cues,” (Hoover, 2006, p. 1), and often misunderstandings, literal interpretation, and/or sensory over stimulation can lead to overreactions, irritability, a low frustration tolerance, tantrums, aggressiveness, appearing to have an explosive (or bipolar) temperament, self stimulation, anxiety, depression, or self injury (Mayes, 2008, p. 2). Children with high functioning autism or Asperger’s Syndrome develop a tendency of distrust towards others, because of social failures and negative social experiences over time, which can lead to self-isolation and social phobia. This behavioral reaction can be viewed as “rude” by others, and often people on the spectrum struggle to understand why they are not liked or frequently feel rejected (Hoover, 2006, p. 1).

Source:  Disabled World – Disability News for all the Family: http://www.disabled-world.com/artman/publish/article_2255.shtml#ixzz24Om7cBEP

The autism battle

 Autism  Comments Off on The autism battle
Apr 042012
 

It is challenging to hear the diagnosis that your child is on the autism spectrum.  According to CDC, the rate is now 1 in 88 versus 1 in 117.  The pattern has been that the rates are going up.  I have heard of the diagnosis for both of my children in the past year – first my 3 year-old in July 2011, then my 13 year-old this past December.  If we felt clueless about parenting before, the diagnosis leaves us even more lost.  I am still looking for my parenting manual, which seems to keep getting out-dated all the time anyway.

What you also realize with the diagnosis is that you have a new part-time, unpaid and frustrating job.  You seek out help only to get resistance.  Your insurance company will tell you services are not covered that you find out later should be.  Schools will try to find the quickest way to get your child’s IEP done if they do it at all.  For anything you hope to accomplish, you must push, prod, strategize and fight at times.

All of this will leave you exhausted at different levels.  You will realize that along with the diagnosis, you needed a mentor to help you navigate this new unpaved path.  You soon realize that priority one may be to find support from those who have already tried to muddle their way through this difficult path.

CDC Report

Definition of autism being modified

 Autism, Children, Parenting  Comments Off on Definition of autism being modified
Jan 242012
 

My amazing kids

There was an interesting article in The New York Times recently (published 1/19/12) about autism.  According to the article, the definition of autism is being modified, which would mean some would not meet the criteria for the diagnosis.

<Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply.

The results of the new analysis are preliminary, but they offer the most drastic estimate of how tightening the criteria for autism could affect the rate of diagnosis. For years, many experts have privately contended that the vagueness of the current criteria for autism and related disorders like Asperger syndrome was contributing to the increase in the rate of diagnoses — which has ballooned to one child in 100, according to some estimates.

The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.

The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously. “She’s on disability, which is partly based on the Asperger’s; and I’m hoping to get her into supportive housing, which also depends on her diagnosis.”

The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”>

This is more interesting and personal to me because exactly a week ago, my thirteen year-old son was diagnosed with Asperger syndrome.  I wonder if he was tested in a year, whether he would meet the criteria.  This comes six months after hearing of my two year-old’s diagnosis of high-functioning autism.  I am still trying to understand the full scope of what she has and what I can do to address it.  I now need to do the same for my son.

Today is interesting and unique because I have a meeting this afternoon to work on my daughter’s IEP (Individual Education Plan) with the district, while a meeting for the same is occurring for my son at his school.  I need to be focused on my daughter’s 12-page IEP for now so I can best advocate for her.  Soon I will need to shift my focus on the specifics of my son’s plan.  It is quite a mental shift to think about what a preschooler needs and then what a teen needs.

Diagnosing Autism

 Autism, Children, Finding balance, Motherhood, Parenting  Comments Off on Diagnosing Autism
Dec 122011
 

When I think about the path that led to my daughter’s diagnosis of high-functioning autism in July when almost 2 1/2, I am amazed at how random that path was.  My husband happened to speak with a coworker who was getting some assistance for their child through Child Find.  We wondered about Maya and had her evaluated with the organization when Maya was about 1 1/2.

The results were primarily that there was a speech delay.   She then began to see a speech therapist and occupational therapist.  This service will end when she turns 3 in February.  Soon she will have an evaluation to see if she qualifies for services through the district once she is 3.

Earlier in the year, concerns had been brought up by a therapist regarding autism.  The ball to have her evaluated for the disorder started rolling and was blocked repeatedly by her insurance.  After much pushing and coordination between Child Find and myself with Maya’s insurance, she was given a referral to be evaluated.

I filled out a mountain of paperwork and waited for her evaluation on June 24.  We were lucky to not have had to wait too long, as many people wait a while on a long wait list.  As the evaluation approached, we heard increasingly that she did not seem to have the disorder.  I was just glad to be able to rule it out.  This of course made the actual diagnosis of her having high-functioning autism even more mind-boggling.  Every day, we look at her wondering if there was a mistake – at times it seems it was, and at others it achingly does not.

The material and books to read and learn about autism are immense and daunting.  How does a parent even find the time when we are overwhelmed and exhausted from the extra effort involved in raising a child with autism?  What little I have managed to read so far stands out with the message to look at my daughter specifically as the wonderful human being I know her to be and to learn directly from her about her and not get worried or weighed down by a label.

 

Learning About Autism

 Autism, Children, Finding balance, Motherhood, Parenting  Comments Off on Learning About Autism
Aug 282011
 

Maya 7.18.11

I started to learn about the neurological disorder autism when told my daughter may be on the spectrum.  The disorder is not black and white and has a huge grey range or spectrum where one may fall.  My daughter is fortunately on the high-functioning end.  I hesitate to use the word “fortunate.”  Over-all, I am fortunate to have this human being in my care, no matter where Maya is on the spectrum.  As any parent can appreciate, she is my precious child, no matter what issues she and I need to overcome or manage.

While I was waiting to have Maya evaluated, I was amazed at all the coverage the disorder receives these days.  It’s possible that I was more attuned to the topic and noticed it more due to my situation.  There was mention of the disorder being possibly caused by vaccines and as a result, some parents have refused vaccinations.  This has largely been proven to be a myth and is potentially dangerous to children.  There was mention of potential contaminants in the environment as a possible cause along with genetics.  It’s possible certain environmental situations “activate” the gene.  It is still unknown what definitively causes autism, though it’s generally understood that genes play a role.  It’s possible some relatives in a family have some level or mutation.

A parent can invest considerable energy trying to understand “how” and “why?”  I realized I could surf the web forever trying to get answers.  Meanwhile, Maya needs care and attention.  It became apparent I needed to balance my desire to understand with trying to be the best parent I can be to her now.  Whatever I do understand of her specific needs can be utilized immediately.  In that sense, there was some relief in getting the diagnosis because it helps me to understand some issues that did not make much sense to me.  I have a place to turn to now for answers rather than guessing or doubting myself as a parent.

A resource:

Lack of Eye Contact May Predict Level of Disability in Children with Autism

An Unexpected Diagnosis

 Causes, Children, Personal Growth  Comments Off on An Unexpected Diagnosis
Jul 232011
 

Maya enjoying a Caribbean beach 2 weeks ago

We returned late the night of July 11 from Cancun, Mexico where we had vacationed for a week at the Riviera Maya. It had been an exhausting full day journey from the resort to our city of Denver, CO.  The following day, we had an appointment to get feedback from our daughter Maya’s evaluation for autism, which we had just before leaving.

Maya had been seeing a speech and OT therapist the past year for some delays, but we had been getting very encouraging signs about her progress.  We were being regularly told by friends that she did not appear to have the disorder.  Her OT therapist was also doubtful, particularly as we got close to the evaluation on June 24.  She was concerned about our time and energy being wasted with the lengthy evaluation.

As a result, we were also assuming that we would get a clean bill of health regarding our daughter, particularly me.  We discussed how we would handle it if we received the diagnosis of autism and we decided that there was no way to fully prepare.  We would just have to take the blow and begin the process of dealing with it; if that is where we would be.  And that is how it went.  The two psychologists met with us for two hours on the afternoon of the 12th in a small room and gave us the news upfront.  Then they patiently waited as we absorbed the hit and placed some tissue between us, which I soon required.  Then I tried to ask every question I could think of and to understand what I could, while being in the mental haze of  jet lag.

On the way home, after leaving a message with the OT therapist on the result, I bawled all the way home.  She called back and we chatted while I was parked in my garage.

Exploring a flower at the Mexican resort