Autism and Anxiety

It is important to understand that anxiety is virtually part and parcel of having autism. Tony Atwood, Ph.D., an internationally renowned expert, is fond of saying "Autism is anxiety looking for a target." That makes sense when you think about it.  If you have a neurological disorder which affects speech and language, relating and communications, and which includes repetitive behaviors and sensory dysfunction, then there is plenty to be confused and befuddled by in the "neurotypical" world.

In an article recently published to the Journal of Autism and other Developmental Disorders, the authors (Shulamite A. Green and Ayelet Ben-Sasson) discuss the concurrence of Autism Spectrum Disorders and anxiety and/or sensory over-responsitivity (SOR). In children with ASD, rates of anxiety are estimated to be 18-87% (3-24% in typically developing children). The rates of SOR are estimated to be 56-70% as compared to 10-17% in the general population of children. SOR has been linked to anxiety in children with ASD in three studies. Anxiety disorders in people with autism may add to functional impairments which impact their ability to engage in everyday activities and social interactions with others. In this article the authors presented three theories to explain the association and also discussed the implications these theories have on the treatment options.  Autism Community



I knew that autism and anxiety often go hand in hand but thought I had escaped that when Monkey Man didn't show any signs of anxiety by the time he was six.  I was dead wrong.  It all started on a wednesday night.  It was just him and I having a bed time snack.  We were talking and all of a sudden he got this scared look on his face, something I had only seen when he was asked to do something that he knew was scary because he had done it before (like go on a ride at an amusement park, which he did once and he knew was scary), and he said, "There is going to be a tornado tonight."  Now there hasn't been a tornado in our area since before he born, there hasn't been a tornado warning this year at all, and I had no idea where this was coming from.  I explained to him that there wouldn't be a tornado and if one ever did come we would hear the sirens and know to go to a safe place. And where we would go and what would happen, etc. 
He seemed satsified with the information and went to bed without incidence.  On Thursday night he seemed a little anxious before bed but again went to sleep without incidence.  Now comes Friday night and I can tell you it was horrifying.  I put him to bed like usual, following his bedtime routine.  He comes out of his room two minutes after I laid him down and says he wants the light down the hall off.  First of all the light doesn't shine into his room and second that light is always on incase I have to get to one of the kids in the middle of night or incase one of them have to go to the bathroom.  So I tell him no, that the light will stay on.  He goes back to bed only to come back out about two minutes later.  He says, "If the light is on I will cry."  At this point I tell him to go to bed and I would see him in the morning.  Another couple of minutes pass and I hear him crying, actually crying, not the ugly fake cry he has, the tears and all kind. 
At this point I am not sure if he is just trying to stay up, which he normally doesn't do, or if he is actually freaking out about a light being on.  So I tell him that if he doesn't go to sleep he won't be able to play his DS the next day, which is a huge motivator for him, and I walk back into the livingroom.  A few minutes later I hear him say, "I can't breath."  So I bring him out into the living room with me so he doesn't wake up his little brother who he shares a room with.  He lays down on the couch for a few minutes and calms down.  All of sudden he sits up and starts freaking out, yelling, "This isn't my life. This isn't my life."  In tears I go over to him and just hug him.  Eventually he says something about being scared of having a night mare.  When I asked him when the last time he had a night mare was, he told me a long time ago.
Now how sad is that, your six year old telling you this isn't my life.  It's just not something that a six year old should say. I don't let him watch drama movies or anything that is above his maturity level (which at this point is mostly cartoon type shows). He is never dramatic about anything but here he is freaking out.   I have never seen him act like this, or be fearful of things that could happen but probably won't.  And seeing him like this just breaks my heart.  There is nothing I can do for him besides hug him and try to be reassuring.
Saturday night was uneventful, I'm thinking mostly because his cousin was spending the night and they were both sleeping in Monkey Man's bed.  Sunday night we were back to pretty much the same thing that happened on Friday night but it was not as bad and he eventually went to sleep in his bed with about 15 stuffed animals around him, his weighted blanket and his star chewie.
By Monday morning I was becoming increasingly concerned so I called his pediatrician and made an appointment, they got him in on Wednesday morning. Monday night and Tuesday night were pretty much the same as Sunday night, he would eventually fall asleep with all of the animals and blanket, etc.
Wednesday morning finally arrives and I tell the doctor what has been going on and that I was thinking he was having panic attacks, because of the fear and him saying he couldn't breath.  She agreed and suggested that he see's a counselor who has experience with children on the spectrum and anxiety issues.  Then she offered to make an appointment for him with someone that she knew.  The appointment isn't for another month but it's something and the panic attacks seem to have lessened for the moment as long as he has his stuffed animals, weighted blanket and star chewie he can fall asleep.
So here I was thinking that we had escaped the anxiety part of autism and it was hiding, getting ready to rear its ugly little head in the form of panic attacks.  I wouldn't have believed that a six year old could have panic attacks but here we are living with them.

Its been a while

Wow I can't believe how much time has passed and I have neglected this blog. I will be back soon with new posts.

When did this happen

As a parent with a child/children with special needs you learn to develope some thick skin and do things that you never in your wildest dreams thought you would be able to do.  I remember before I had children, I never thought I would be able to handle having a child with special needs.  I have always been such a quiet person, very laid back, tried not to upset people, never really fought for what I deserved, etc.
Now days, with having 3 children with varying special needs I have learned that I am my children's biggest advocate.  If I don't fight for what they need and what they deserve, who will.  I don't stand idly by and let others not give my children what they need.   In the past I would have never fought with a school district over an IEP, or yelled at a principal when they were not following an IEP that was in place,  or placed calls to multiple agencies just looking for someone who was willing to point me in the right direction to get services for my children. 
I have learned early on in my journey with special needs that I have to stand up and voice my opinions, I have to let people know when I don't agree with what they are saying or doing(not in a "just being a bitch" type of way, I do it nicely). 
Most recent example is..... Monkey Man is almost 6 and they had to re-evaluate for special education.  Well everyone was telling me that they didn't think he would qualify to have an IEP anymore, as happy as that made me I was also beyond scared.  He is doing great because of the supports we have in place, and he is doing great this year in Kindergarten but what about next year in 1st grade when there will be more demands put on him.  In the past I would have just agreed and he would be without an IEP, but now.... I called a very high up advocate who is beyond awesome when it comes to getting the school to do what they should since he was the one who wrote or helped write most of the special education laws :)  He completely agreed with everything, and was appauled that they wanted to end the IEP.  I also called the autism support person in my district (she was also one of the people doing the evals) and let her know how I felt about everything and my fears of Monkey Man going down hill if the supports were not there. 
Needless to say, he kept his IEP.  They took some things out (things he no longer required) and added in some new things that he needs to work on. 

When did I become this person who stands up for herself and her children, when did I start voicing my opinion and not caring if I upset anyone, when did I become one of those people who don't care if everyone likes them, when did I become the person who will stand up to others when she knows that the other person is not doing what needs to be done,  I became this person the day I realized that no one else will be this person and fight to get my children the things that they need and deserve.  I became this person the day I became a mother and more so when I became a mother of a child/ren with special needs. I became this person the day I realized if I didn't advocate for myself and my children, who would.  And I like this person I have become!!!!!

Taken from  FASlink.org

Fetal Alcohol Spectrum Disorders

An individual’s place, and success, in society is almost entirely determined by neurological functioning.

A neurologically injured child is unable to meet the expectations of parents, family, peers, school, career and can endure a lifetime of failures. The largest cause of neurological damage in children is prenatal exposure to alcohol. These children grow up to become adults. Often the neurological damage goes undiagnosed, but not unpunished.
They can become the forgotten kids - the children that have nearly invisible disabilities. They have their arms and legs, can see and hear, run, play, etc., but most have never been to a birthday party or a sleepover.. they are last to be chosen to play, and first to be blamed. Their illnesses aren't fatal, but a small part of their hearts and souls die with every rejection. Their behaviors may seem odd or unpredictable to themselves as much as society.
Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurodevelopmental Disorders (ARND), Static Encephalopathy (alcohol exposed) (SE) or Alcohol Related Birth Defects (ARBD) are all names for a spectrum of disorders caused when a pregnant woman consumes alcohol.
More than 20% of children have been exposed to high levels of alcohol in utero. All will suffer varying degrees of effects, ranging from mild learning disabilities to major physical, mental and intellectual impairment. It takes very little alcohol to cause serious damage. Research has shown that even a single exposure to high levels of alcohol can cause significant brain damage in the infant.
Alcohol is toxic at all concentrations. Alcohol damage to the fetus occurs over a wide continuum. Damage varies due to volume ingested, timing during pregnancy, peak blood alcohol levels, genetics and environmental factors.
FAS/E is a lifetime disability. It is not curable. A child does not "grow out of it". However, early diagnosis and intensive, and appropriate, intervention can make an enormous difference in the prognosis for the child. There is a small window of opportunity, up to about age 10 or 12, to achieve the greatest potential for an alcohol affected child. That period is when the greatest development of fixed neural pathways occurs. That is when alternative "coping" pathways are most easily built as "work-arounds" to damaged areas of the brain. Time is of the essence.
FAS (Fetal Alcohol Syndrome) individuals may have a distinctive physical appearance and lower IQs, but have lower crime and addiction rates than FAE individuals as they get earlier diagnosis and can be better protected by society and their parents.
While FAE (Fetal Alcohol Effects) individuals may lack the outward physical appearance of alcohol damage, and generally have higher IQ's, the internal damage to the brain and other organs can be just as serious as full FAS. IQ measures convergent fact based thinking. Life skills require divergent adaptive thinking that in FAE individuals will be substantially lower than their IQ. However, because FAE individuals "look normal" they are expected to perform normally. These issues lead to secondary disabilities. Primary disabilities are those the child is born with. Secondary disabilities are those that develop as a result of failure to properly deal with the primary disabilities.
"The girls get knocked up and the boys get locked up." They are followers, easily misled, with little or no appreciation of consequences. Without intervention, many ride the justice system merry-go-round or become "homeless street people". They are required to compete in society but have been denied the tools to do so.
Of FAE individuals between the ages of 12 and 51:

• 95% will have mental health problems;
• 60% will have "disrupted school experience";
• 60% will experience trouble with the law;
• 55% will be confined in prison, drug or alcohol treatment centre or mental institution;
• 52% will exhibit inappropriate sexual behaviour.

Of FAE individuals between 21 and 51:

• more than 50% of males and 70% of females will have alcohol and drug problems;
• 82% will not be able to live independently;
• 70% will have problems with employment http://depts.washington.edu/fadu/
• Early diagnosis can help prevent secondary disabilities such as mental health problems, dropping out of school, trouble with the law and substance abuse. After diagnosis, parents often find that their ability to cope with the child's behavior changes dramatically when they understand that the problems are most likely based on organic brain damage, rather than the child's choice to be inattentive or uncooperative.

Princess, Monster and Itty Bitty were all exposed to alcohol while in the womb, my sister was even forced into rehab when she was pregnant with Itty Bitty. But so far Princess is the only one that has shown any signs of being on the fetal alcohol syndrome spectrum.  Princess was diagnosed with pFAS (partial fetal alcohol syndrome) back in 2009.  When Princess was 2, I started noticing that she was so active, way more so than other 2 year olds.  At that point I figured she had ADHD, since it runs in our family.  But then by the age of 3, I noticed that she had memory issues, sensory issues, and still was extremely active. At that time, I started researching fetal alcohol syndrome (FAS) because I knew that it was possible that Itty Bitty could be affected because of my sisters alcohol use. 

When I started reading more and more about FAS, I realized that Princess showed a lot if not all of the signs of FAS. When I brought up my concerns to her pediatrician, he suggested I take her to a geneticist for testing.  There was only one geneticist in my area that took her insurance and he was only up in the area for a couple days a month.  So needless to say it took us 5 months to get in to see him.  In the mean time I did as much research as I could and talked to other parents online. 

At her appointment the geneticist diagnosed Princess with pFAS (partial fetal alcohol syndrome).  It is considered partial because she doesn't have all the facial features of full blown FAS. The diagnosis saddened me because I knew that it was something that would affect her for her entire life and she would always have to deal with the effects of her mother's inability to stop drinking while pregnant. But the diagnosis also empowered me to do all I could to make sure she would have the tools to deal with all that life threw at her.

In my heart I knew that she could overcome all the effects of her diagnosis and she has.  She is now almost 5, doing great in 4 year old kindergarten, learning new strategies to deal with limitations, and is just an awesome little girl.  I can't say what the future will hold for her but I know she will be able to do anything that she puts her mind to.

I also can't say what the future will hold for Monkey and Itty Bitty and if they will have any effects of their mothers alcohol use, but they too will go far regardless of what happens.

From Wikipedia........

Sensory processing disorder

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Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body (visual, auditory, tactile, olfaction, gustatory, vestibular and proprioception). For those with SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organising, problems with doing the activities of everyday life (self care, work and leisure activities including work and play), and for some with extreme sensitivity to sensory input; sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion.^[1]

The term SPD is coined by occupational therapist A. Jean Ayres as part of her theory that deficits in processing sensation from the body and the environment lead to sensorimotor and learning problems in children. The theory is widely acknowledged, but also has generated tremendous controversy. Some state that sensory processing disorder is a distinct diagnosis, while others argue that differences in sensory responsiveness are features of other diagnoses.^[2] SPD is not recognized in any standard medical manuals such as the ICD-10^[3] or the DSM-IV-TR.^[4] The committee that prepares the DSM-5 has requested that additional studies are done before the disorder can be recognized.^[2]
On the other hand, SPD is an accepted diagnosis in Stanley Greenspan’s Diagnostic Manual for Infancy and Early Childhood and as Regulation Disorders of Sensory Processing part of the The Zero to Three’s Diagnostic Classification.^[5]
SPD is often associated with a range of neurological, psychiatric, behavioral and language disorders.^[6]
There is no known cure; however, there are many treatments available.^{[citation needed]}

^{All four of my children suffer from this.   Monkey Man is a big sensory seeker, which means he craves sensory input.  He is a chewer, because he is very hyposensitive in his mouth he chews on anything and everything.  Because of that he wears a chewy tube all the time so he has something more appropriate to chew on than his clothes, toys, and everything else.   He also craves full body input.  He loves big bear hugs and weighted blankets, he just loves the pressure.}   

^{Princess is an oral sensory avoider.  She refuses to eat certain textures.  She also used to hate having anything on her hands, but with the help of a occupational therapist who specialized in sensory issues, she has overcome that.  She is also a whole body sensory seeker.  She loves crashing into things with her body and bear hugs.} 

^{Monster is a huge sensory seeker too.  He loves crashing into things, being rolled up in a blanket, has a weighted blanket and a chewie tube.} 

^{Itty Bitty used to be a huge oral avoider.  As a baby he had horrible suction, he had a very difficult time transitioning to solids, and an even more difficult time transitioning to table food.  After working with an occupational therapist for a year he is doing very great.  He has finally started eating like a champ and he is gaining weight finally so maybe he can go over the 5% tile.}  

Ten Things Every Child With Autism Wishes You Knew

BY ELLEN NOTBOHM
1. I am first and foremost a child.  I have autism. I am not primarily "autistic."
2. My sensory perceptions are disordered.
3. Please remember to distinguis between won't (I choose not to) and can't (I am not able to).
4. I am a concrete thinker.  This means I interpret language very literally.
5. Please be patient with my limited vocabulary.
6. Because language is so difficult for me, I am very visually oriented.
7. Please focus and build on what I can do rather than what I can't do.
8. Help me with social interactions.
9. Try to identify what triggers my meltdowns.
10. If you are a family member, please love me unconditionally. 


Sometimes as parents and caregivers, we can get so hung up on labels that we forget that our children are who they were before they were labeled with this and that.  We forget that our children are children and there is always room for growth in all area's no matter where they are at on the spectrum.  
I am constantly reminded of how much of a concrete thinker my oldest son really is and he usually reminds me in such a silly way.  Here is one example....
Me- "Your driving me crazy." (he wasn't listening that day)
Him (with a serious yet confused look on his face) - "But I can't drive."


It's time like those that I understand how confusing the world must be for him, with all of the little puns and idioms that people use every day.  Like, "it's raining cats and dogs" or "don't get your undies in a bundle" or even something as simple as someone over exagerating a situation.  He is so literal and I am guessing that he actually pictures cats and dogs coming out of the sky. 


He is also very visual even though he is verbal.  He thrives off of visual cues, visual schedules, and people showing him how to do something versus someone telling him how to do it. 


Another thing that most people don't know, it autism is such a big spectrum.  There are kids like my two that are mild on the spectrum and then there are children who are severely affected.  I can honestly say that before my oldest was diagnosed, I knew next to nothing about autism and like most people I picture Rain Man when I thought of autism.

The inspiration behind the title of this blog.

Not long after my oldest son was diagnosed with autism, a friend of mine gave me this writting and it put alot of things into perspective for me......

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.