Thursday, August 30, 2012

Why It May Be Difficult to Recognize Depression in People with Autism

 Author:  BeenThereMom-Parent to an adult son on the autism spectrum

In the “Mood Disorders” section in this blog, I was reading about the 2006 research report that said 25% of children with autism met the diagnostic criteria for depression.  The mean age in this study was nine years old.  I was reminded about the difficulty we had realizing that our son was actually depressed, not just withdrawn and non-social because of his autism.

One reason for the difficulty in recognizing depression in children, of course, is that their symptoms are usually different from those of adults. They may not verbally complain of feeling low and will often be irritable rather than sad. If you add to this other complications, such as developmental disability or autism, it’s not hard to see why it might be difficult to identify any kind of mood disorder.  An article by Christine Cadena on Yahoo Voices talks about the difficulties of diagnosing depression in children withhigh-functioning autism.

When my son, Jack, was a teenager, we noticed he was becoming rather surly and more quiet than usual. He decided that he was too fat, so he started obsessively counting calories and fat grams in everything he ate.  He’d always been very particular about his clothes, preferring colorful brand-name items in contrast to those of his older brother, who would wear nothing but black or gray.  His brother, Nate, had been in treatment for depression for several years by this time and at the age of 18, attempted suicide.  We didn’t know how to approach this with Jack – it had happened in the evening, after he had been sleeping and he never knew about our trip to the emergency room or that his aunt and uncle had come over and stayed in the house with him while we were gone.  So, I think we erred on the side of not talking about it enough, somehow hoping he wasn’t paying much attention or assuming he wouldn’t understand.  At this point, I don’t think we even knew Jack was autistic so were probably misinterpreting his lack of emotion as a sign that he was handling it.

The next thing we noticed was that he became tearful and would go into his bedroom and secure one of his belts around his neck, like he was trying to choke himself.  We thought that maybe he was just acting out what was going on with his brother and tried to talk with him.  But communicating what was going on in his head was extremely difficult for him, partly due to the damage to his frontal lobe and we didn’t realize just how badly he was feeling.  He’d have angry outbursts over things we couldn’t understand and I finally decided to take him to see the psychiatrist who was treating Nate; I don’t know how much experience he’d had with developmentally disabled teens (although I later learned he had a brother who was also disabled), but the first thing he did was weigh him – to my shock, he’d lost 25 pounds in a fairly short period of time!  That was about all we had to go on as to the severity of his depression.  The doctor put him on medication and found him a therapist, but it was obvious that this person didn’t know how to work with Jack, nor did the next several.  I finally found a therapist through his social worker who DID know how to work with him. 

Since one of the common traits of depression is withdrawal, it’s easy to see why it would be hard to miss in a person with autism.  Jack has a tendency to disappear into the woodwork, so to speak, even to this day, and it’s easy to forget he’s there if I’m preoccupied with something else.  When we try to ask him questions to get him talking, we’re lucky to get more than a one-word reply. On the other hand, if something strikes him as being particularly funny or interesting, he’s able to talk at length about it and will surprise you with how much thought he’s put into it.

Besides seeing a therapist, Jack has also been taking Wellbutrin, Concerta and Abilify for a number of years, which seem to keep him functioning at a good level most of the time.  Because of the weight gain caused by Abilify, we tried switching him over to Geodon, but for him, that didn’t work.  His mood rapidly deteriorated and he was missing work, not taking care of himself and called one night to tell us that he had tightened a belt around his neck and couldn’t get it off.  When his mood isn’t stable, it takes very little to set him off and he becomes paranoid about people having it in for him.  For example, he’ll start believing that people he works with are purposely trying to make his life “hell” and then he becomes defensive and combative.  Luckily, this has only happened a few times and the people he works for now are fairly educated about his disabilities and how to handle it when he does act inappropriately.  His job coach keeps close tabs on his progress at work and speaks with his supervisor often so that they can nip any small problems in the bud before they might become larger ones.

For Jack, I think a lot of his depression may be a result of his being intelligent enough to know that he isn’t like most other people in regard to mental abilities.  He dreams about being an airline pilot and owning a mansion in one of our wealthiest neighborhoods here, yet knows that isn’t going to happen.  I can only imagine how frustrating it must be.  Even in our families, he’s almost invisible to many of his cousins and isn’t close to his brother.  I worry about who will be watching out for him when we’re gone or no longer able to do so, although I know there are resources available for that.  I don’t know if I can expect his older brother to be responsible for him.  I guess we just do the best we can to set him up for success, like anyone else does for their children, regardless of abilities.

What I’ve learned from dealing with depression in my son is that if you have any suspicions at all that your child might have a mood disorder, don’t hesitate to get an evaluation from a mental health professional. Don’t be afraid of getting criticized for being an alarmist and try to find someone who has experience with children with special needs.  I believe there are more of them out there now than there once were and it’s worth it to keep looking until you find the right person.  Check with any of your child’s healthcare or social service providers, who may have knowledge of these kinds of professionals. If you feel that the provider your child is working with is not really connecting with your child or really understanding what your concerns are, it’s important to speak up and see if they are either willing to consult with someone else or refer you to a different provider.  I know from experience that you can waste a lot of precious time in tolerating less-than-adequate treatment.

Monday, August 27, 2012

The Vegetable of Last Resort

By Grandma Kathleen, homeschooling grandmother of an 11-year-old with an Autism Spectrum Disorder

From the first time that Tom (then two years, six months and newly returned with his parents from a western state) came to a family Thanksgiving dinner, severe food aversions have been an issue in our family. My mother (his great-grandmother) and I (his grandmother) had 98 years of mothering between us, and we were sure that if we just gave him a plate with small amounts of food, and did not look at him, put no particular expectations on him, he surely would eat something.

Wrong! Instead he screamed and acted as if we had intentionally put a plate of live worms in front of him, and peace was not restored until he was allowed to leave the table and run around in the living room.

I tried everything, but he was growing rapidly on a diet which consisted primarily of French fries (overcooked crispy) and corn chips. He and I grew a vegetable garden. He proudly served the produce to his visiting aunt and uncle, but would not even taste it. His occupational therapist had him play with food; I brought him fresh strawberries and showed him how to dip them in sugar. He wouldn't taste them. We made things with marshmallows and did finger painting with chocolate pudding. He proudly learned to cook and make gluten-free brownies. His diet remained constant.

I found in the library a book entitled Can't Eat, Won't Eat by Brenda Legge. That at least reassured me that this was not an uncommon problem, even though to me it seemed extreme. When Tom was almost five, he was diagnosed serologically with celiac disease and gluten ataxia. That was a big help, but unfortunately he had already learned to distrust food, and his oral sensory issues made it difficult for him to eat anything that was not crunchy and hard. I read books about sneaking vegetables into stews and muffins, but how do you sneak anything into a corn or potato chip? We bought veggie chips of various kinds and brands. He would take one bite, look betrayed, and spit it out.

Yes, I knew this was not good for his health. I had worked for six years in the Nutrition Division at Cornell as a Research Associate, and was a denizen of health food stores and farmer's markets for years before that. But nothing was helping. I read Just Take A Bite  and even bought his family a table for family meals. That didn't help, because Tom could not stand to smell meals with onions or cabbage-family vegetables and would ask us to leave the room if we were eating something like that in his presence! Mixed foods were “disgusting!” Once, he told me, his parents had purchased a cauliflower with intent to cook it! Tom asked me, as his grandmother, if there wasn't anything I could do to stop them. Apparently he thought that in those circumstances I should be able to call Child Protective or something. The odor would overpower him, probably do him in, he thought.

We took him to the Feeding Aversions Center at the local Regional Medical Center. The team assessed him and said we were doing very well (you could have fooled us), that with “these kids” we take what we can get. Of course, we were supplementing his diet, but the only thing that they were worried about was whether he was getting sufficient protein. He visited a psychologist for a couple of months. He tasted a pea and gagged and nearly vomited. He happily drank a vegetable-fruit juice combination and promptly had projectile vomiting.

This past year or two we have made three great leaps forward in Tom's diet. First, I took him to Longhorn Steakhouse where he discovered that he likes the top sirloin steak they have on the children's menu—even medium! He eats every bit of this every time. (He won't eat steak at home yet, but we are hopeful.) Since he is homeschooled I consider this visit Social Skills and Nutrition 301. Secondly, he got braces, which meant that he could no longer eat extremely hard and crunchy food, and so his beloved overcooked French fries could be normally prepared. And third, there is the Vegetable of Last Resort.


This is a recipe I developed myself. To make it, you use ½ cup pre-cooked white corn masa and 1 small jar of pureed sweet potatoes, a little water, and ¼ tsp. salt. (Yes, I am talking about baby food sweet potatoes, but I do not say that around Tom.) Mix the corn masa with the salt. Pour the sweet potatoes into a ½ cup measure, then make up the difference with a small amount of water, so that the total, sweet potatoes and water, equals ½ cup. Mix, divide into four equal balls, press in a tortilla press, and fry in a deep fat fryer at 375 degrees. This makes four sweet potato/corn tortillas which can be cut with scissors into 24 to 32 chips. Tom actually likes these better than regular corn chips.

What usually happens with children with sensory issues (usually, boys) is that when they reach their adolescent growth spurt either they develop severe nutrient deficiencies which must be medically addressed, or their new hunger prompts them to expand their diets. Sometimes you need to get a little creative to make sure that your child gets the nutrition they need. We are hopeful for Thomas who is now 11-years old.

For more reading, try the following:

Brenda Legge, Can't Eat, Won't Eat:Dietary Difficulties and Autism Spectrum Disorders, 2008. This book is especially good at describing the severity of the problems involved.

Lori Ernsperger et al, Just Take aBite: Easy, Effective Answers to Food Aversions and Eating Challenges!, 2004. These methods didn't really work for us, but they might for some people. It seems to require some good professional support.

Cheri Fraker et al, FoodChaining: The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child’s Diet, 2007. This concept has helped us more than the others.

Saturday, August 11, 2012

10 Reasons to Visit NotYourTypicalKid

Author:  MomtoMax-Teacher, freelance writer, and mother to a teen with autism


We are just getting started with this site and wanted to send out a warm welcome to all who stumble upon our humble bloggy abode.   Please make yourself at home.

We realize that there are hundreds of thousands of blogs out there and many are about parenting children with special needs.  So what makes this blog so darn special?  I am glad you asked.  :>)

1. We love to explore our children's special interests.

If you like penguins, trains, cats, carousels, disney princesses, church architecture, dinosaurs, bears, Christmas carols, anime, hiking, biking, the Muppets, the Simpsons, camp songs, retro Nintendo games, art museums, drawing, jumping on trampolines, and bubbles then you are in luck!  My son Max loves all these things and more. 

If your child has a special interest we would love to hear about it.  Other people might tell you that they can't stand to hear another word about your child's fascination with Thomas the Tank or the eating habits of squids.  But we do want to hear about the things your child enjoys.  We can also tell you how to turn these special interests (what others may label as an obsession) into a learning experience, a hobby, or even a career.

2.  We are taking this journey with you.

There will be no preaching on a pulpit here.  My co-authors and I do have a lot of experience under our belt of teaching and parenting a child with special needs.  But we do not claim to know all the answers.  Our journey has not ended by a long shot.  We are still learning along the way just as you are.  And we welcome your input, ideas, and stories.  

3Our site represents a variety of diverse perspectives, experiences, and viewpoints.

The one thing we will not be doing here is to tell you that there is ONE way to help your child.  In fact, we will be presenting a wide variety of opinions on everything from how to toilet train to how to prepare your child for leaving home.  We believe in the power of choice.  It is your choice as to how to raise, parent, and teach your child.  We will assist in the process by giving you a ton of information so that you can make an educated choice.

4.   This isn't just another "mommy blog." 

There are many people who are involved in the caretaking of your child.  It isn't just moms out there who care for children. There are dads, grandparents, siblings, aunts, uncles, friends, etc. who may be involved in your child's life and well being.  On this blog will be hearing from a wide assortment of caretakers including men. Dads, grand-dads, and brothers are under-represented in the blog world when it comes to the topic of caregiving.  The male role is quite often minimized or even ridiculed when it comes to parenting or taking care of kids. Good parenting/caregiving has nothing to do with whether you are a man or a woman.  On NotYourTypicalKid, we are going to get away from sexist stereotypes by discussing good parenting techniques from both the female and male perspective. 

5. We are not about to cure your child.

Okay so maybe this a reason you may want to skip reading our blog.  In the world of autism there are folks known as "curebies."  I didn't come up with the name, they did.  No judgement here.  But yes there are some parents who have a goal of curing their child's autism or other neurological, mental, or developmental disorders.  It is my humble opinion that this usually is not possible with most of the disorders we are going to discuss.  Yet there are some blogs that offer up some sort of cure, whether it be a special type of therapy, supplement, or medication.  This is definitely not that sort of blog.  There are no miracle cures here to be found, just real life experience and support.  

6.  We aim to give you information you can actually use.

Have you ever bought a book, read a blog, or went to a conference to learn more about your child's condition?  How many times have you walked or clicked away feeling disappointed?  You hear or read a bunch of generic stuff you have heard before or none of it really pertains to your situation.  For me personally, this has happened quite often over the years I have been researching my son's condition.  Some of the best and most useful information comes from other parents who have been there and done that. Another great resource comes from individuals who have the condition themselves and who can articulate what life is like for them.  Teachers, therapists, and doctors also have a lot of in depth information to offer.  However, it is very hard work for the average caregiver to sort through all the lengthy forums and generic medical sites to get to the good stuff.  That is what we are here for.  We want to save you the trouble of scouring the Internet for a few nuggets of useful wisdom.  We will do the work for you.  On this blog you will find resources and information that you can use to help your child in an immediate way.

7.  You won't find any political agendas here. 

We aren't part of a cause, cure, or political agenda.  If you are weary of how special needs have seemingly been taken over by celebrities on a crusade then you are not alone.  If you are tired of the endless controversies which plague parent support forums (such as the vaccine/autism debate) then you will find respite from the madness here.  There are plenty of other sites for these sorts of discussions (or as I see it...pointless shouting matches).  Life is stressful enough.  We want to help you to focus on the important aspects of caring for your child in the day to day.  

8We will be talking about teens and adults with special needs (in addition to the wee ones).

There seems to be a myth that children with special needs never grow up.  There are tons of books and blogs about the preschool set and early intervention.  By comparison there is very little information about teens and young adults who have special needs.  Many of the popular books out there about this age group are autobiographies written by individuals who are considered the "success story" of someone who has overcome their disability.  But there isn't much out there to help the adult with special needs who will require extensive care, possibly for the rest of their life.  In a fantasy world these individuals are supposed to be "cured" by adulthood and blend seamlessly into society.  Let's just suppose that doesn't happen.  Then what?  We are going to help answer this question in a realistic and honest way.  We are going to be talking to parents who have helped their special needs children transition into adulthood and hear about the many hurdles families may encounter along the way.

9.  This blog is more than a blog, it is a community.

I believe in the shared experience.  And for this reason I am not going solo in writing posts for this site.  If you look over on our side-bar you will see a list of contributors.  In addition, if you take a look at our Guest Blogger page, you will see bios of some of the folk who have graciously agreed to write on selected topics and/or be interviewed for their particular expertise.  As we grow this site we will be adding more guest bloggers including doctors, psychiatrists, psychologists, neurologists, parents, teachers, therapists, as well as individuals who have been diagnosed with a mental, neurological, or developmental disorder.  We also want you, the reader, to become part of this community blog by sharing your story.  There will be multiple opportunities and venues for you to become involved on this site including community discussions, guest posting, and a forum (soon to be created).  

10.  We are real.

Some blogs you might think....are these people for real?  I think this is especially true for  some of the parenting blogs in that there may be some embellishment going on.  You know the ones...they have clean houses (even the garage), never watch TV, make all their own clothes, and have cured all three of their children with a supplement made from organic eggplant extract that they grow from home.  Oh and of course positive affirmations. If your child still has (name of their condition) then you just aren't thinking enough good thoughts.

Uh huh...sure.  

Let's get real.  

We are imperfect parents who have imperfect children.  We are going to give you the real deal here in sharing our experience.  We won't sugar coat things but neither will we paint a picture of gloom and doom.  We are simply going to tell it like it is.  And we hope that you do too.  Sometimes it helps to know that there is some other parent out there trying to get the finger paint stains out of the carpet while you child is throwing gluten-free cookies at the dog (that you just spent over an hour to make).  Sometimes it helps to know that there is another parent who wants to cry along with their child when they have a meltdown.  Sometimes it helps to feel joy when another parent talks about the seemingly small but real victories of their child's first spoken word, a day without seizures, or a first birthday party invitation.

Real people.  Real stories.  Real support.

Stick around.  I promise you that it will be worth your while. 

Tuesday, July 31, 2012

Bumping Down the Road Less Traveled

Author:  BeenThereMom-Parent to an adult son on the autism spectrum

Nowadays, it seems that autism is being diagnosed in children much earlier than was the case when my son, Jack, was born 34 years ago.  We didn’t have the advantage of knowing that he was on the autism spectrum until he was nearly a teenager.  Had we known, perhaps he could have had the benefit of more specialized programs and treatments.  He had the added complication of suffering brain damage at birth, so perhaps it would have been hard to know for sure that autism was a factor, anyway.  In any case, we knew from early on that socialization was a particular challenge for him, as it is to this day.
One of the biggest obstacles to understanding what was going on with Jack was, first of all, our not knowing where to go for help.  No medical doctor had diagnosed him with anything, but we knew, as time went on, that he wasn’t meeting some of the childhood developmental milestones.  We had him screened at 13 months of age because he wasn’t even pulling himself up on furniture, let alone trying to walk. I didn’t know until someone my husband worked with, who also had a special needs child in another state, told him that we should get a social worker assigned to him through the county in which we lived.  That was the first step to ensuring that he would receive the services he needed as time went on.  There was no “manual” on how to find resources, how to know if you even needed them or if they were available.  I remember being at a meeting for parents of developmentally disabled young adults and one woman there had a 21-year-old son who was becoming so violent while living in their home that she was desperate to get him into foster care of some type, yet she had only recently gotten him on the waiting list for services so it was not going to be an easy task.  I’m sure she didn’t even know that he should have been receiving services years before this point.

I think the goal most of us have for our special needs kids is to be able to live as independently as possible.  It was sometimes very difficult to imagine my son being able to have any kind of life on his own, but I will be writing more about our journey to independence, through many challenges and trials, hope and despair, as well as through the frustrations of “the system” and the dedication of various social service and mental health professionals.  Some of this journey involved letting go of our huge wish to protect him at all times, to keep him safe.  We had to understand that a bird that is forced to stay in a cage can never fly.

Monday, June 18, 2012

Social Etiquette

Author:  NotYourTypicalMom-Parent of a teen daughter with Asperger's Syndrome

I have a 12 year old daughter who is very likely on the spectrum and very likely Aspergian.  Just the other day, we were at Hardee's for lunch - yes I know, not terribly healthy - but dh loves their burgers.  Anyway, over the last 12 years we've gone there enough that some of the long-time employees know us and feel very comfortable with us.  One of them came to our table and whispered something to dd - something about Father's Day.  Dd did not appreciate that a total stranger came and whispered in her ear.  We asked dd if she recognized the lady employee.  She didn't.  We told her that this woman was being friendly, but dd doesn't really know how to receive that.  It's something I will be helping her with next:)  I noticed there is a workshop that addresses helping high functioning people on the spectrum....but it’s several hours away from here.  That's a bit of a ways away for me, especially since it's a week-day.  I did see a few other resources for teens when I was reading recently, so I think I'll check those out. 

These are the resources I’m going to check into:

“Manners for the Real World” by Coulter Videos to teach social manners, rules and cues.

“The Transporters” by Simon Baron-Cohen ….also “Mind Reading” is a computer program they developed.

GRASP President Michael John Carley – book “Asperger’s from the Inside Out”

Brenda Smith Myles’ book and calendar series titled “The Hidden Curriculum”.

I’ll let you know how it goes and tell you what I think works for us and why.  Maybe it will help you decide what might work for you or someone you know!

Sunday, June 10, 2012

Autism and Awesomeness...

Kids with autism are awesome!

This is a test post on our brand new blog.