My child has a diagnosis - NOW WHAT?
 

I have been working with families of children who have been diagnosed with Autism Spectrum Disorders for the past 20 years.  Some of the students I have worked with have no official medical diagnosis.  Some of the students are given the diagnosis of ADHD, some Asperger s Syndrome, or Sensory Integration problems, or behavior problems .  Some might be diagnosed with Obsessive Compulsive Disorder.  How about PDD-NOS Pervasive Developmental Disorder - Not Otherwise Specified,  Autism, Autistic tendencies.  Does this sound familiar?   If so, you might want to read on.

If you are like me, you don t especially care what the diagnosis is, but you want to know What can I do to help my child and my family function more appropriately? .  That is what my work is all about.  What these students and families have taught me over the past 20 years is very important information.

A day in your child's life might be compared to walking through a minefield.  Our world is constantly bombardng him/her with stimulation through all of  his/her senses.  This child is trying his/her best to keep all things under control, or in balance, trying to predict what others expect of him/her.  Try as s/he may, the child inevitably steps on a mine - it explodes, and so does the child.

What can I do to help my child?

Can this be fixed ? Let s think about this….in order to require fixing, something must be broken. Is your child broken"? I do not think of a child on the autism spectrum as broken or diseased. This child has neurological differences that must be recognized by those who are a part of  his/her world. This child is not broken,  s/he is different. Some of them more so than others. This child might not think like we do,  process information in the same way we do, or act and react like we do in a given situation. 

I am not trying to over simplify what is happening to and with your child. I promise you, these children are very difficult to live with. A child like this can disrupt an entire family (including extended family, grandparents, aunts, uncles and cousins).   Everyone has an opinion about how this child needs to be disciplined. What they don t know is that you have tried ALL of those things and they don t work.

Why don t these techniques work? One must come to the understanding that these children have a very different and unique perspective about the world around them, and a very different learning style than other children. Parents generally report problems with this child that may have presented itself as early as the first birthday.

 This child has always reacted negatively to company in the home. All of those special celebrations have been disastrous. Any change in routine is difficult.

Perhaps your child wants you to use the same route every time you go to the store. Or wants you to park in the same spot. I am not talking about a simple, Gee Mom, let s park over there …. I am talking about a total meltdown in the car. I probably don t even have to describe for you a total meltdown , because you have experienced this phenomenon in the shoe store, in the mall, in the doctors office, at grandma s house, the grocery store, etc.

Are we having fun yet? I think NOT. How about new shoes and new clothing? No fun there either! 

Yes, all children love to play with boxes, but your child does not play with toys - s/he lines them up, sorts them by color, or just carries a couple of them in his/her hands (much like a security blanket) but does not engage in any imaginative play with toys.

 If you try to join in their play (to show him what we do with cars), you get a very unexpected reaction. Is your child s play more like a ritual, than what you would describe as play"?

How about talking vs. communication.   

1.     Does your child speak? 

2.     Does s/he repeat what you say verbatim?  

3.     Does your child memorize books, videos, and scripts from TV?

4.      Does your child obsess on numbers and letters? 

5.     Does your child request items by asking you a question Do you want a cookie?

Why does my child act this way?"

·        Why is it so important that everything happen in the same sequence every time? 

·        Why does he want to wear the same clothing every day? 

·        Why does he want to wear the same shoes, when I know they are too small?

 I believe that we all have difficulty with change in our lives - but for these children change disrupts their whole world.   By the way, their reaction disrupts our entire world too!

If some or all of these things sound familiar, you and I have shared many experiences. 

My own children taught me more than I ever cared to learn - but I had to learn to survive.

 One mother I have had the pleasure to know had her own survival technique.  When all else failed, she would grab her make believe microphone and break into singing I Will Survive and dance around the house until her son starting laughing at her, or dancing with her.

 I have a feeling, if you are reading this, you too are going to learn more about learning style than you ever thought you would need to know.  So get a cup of coffee, or tea, or a cold drink - lock yourself in your computer rooms, and let s chat.

Some of the things children and adults with Autism have taught me over the years include:
 

1.     The way they process information taken in through their senses (touch, taste, vision, hearing, and smell) is different than how others process the same information.  We all learn through our senses, but our sensory system is predictable - your child s may not be so reliable.

2.      Even if your child is non-verbal, s/he is communicating with you.  His/her behavior may be the only means of communicating.  We need to learn the kind of communication the child/adult is using - and find a way to communicate with them.

3.     Generally for these individuals the most reliable means of taking in and learning information is through the visual channel.  Spoken words often make no sense to them.  When a child does not understand what we say to him/her, we most likely will try to explain more thoroughly, and frustrate the child further.   It may be as though we are speaking to them in a foreign language.

Imagine yourself in a foreign country asking for directions back to your hotel. You ask a local person for directions. Imagine the rate of conversational speech in a foreign language - would you understand what you are being told?  When you gesture to the person that you do not understand- what would an adult generally do - explain it in more detail.  That doesn t help.  But, if you had a paper and pencil and asked them to draw a map, to include written names of streets, right and left turns, the number of blocks - you would stand a chance of finding your way back to the hotel.

4.     These children have amazing skills in memorization. They need to have routines that they can memorize and depend on.  They need for us to draw maps in the form of stories presented visually so they can learn what we expect them to do.

5.     To walk through a day in their shoes would be similar, I imagine, to walking through a minefield.  You child may never be sure what response they may get from an adult.  They may not be sure of what to expect in a new situation - or even an old situation with a new twist.   Of course we have verbally explained all of this to them - but we forget that spoken words are gone in a split second.  It may take them longer to process the spoken information.  By the time they have processed the first few words - we have spoken a paragraph.  So they have to zone out to avoid frustration.

6.     Letters and numbers are very interesting to them. Think about it - letters and numbers remain constant. When you recite the alphabet, or count, the order remains the same.  Rote learning is strength for them. Melody or singing information is also helpful for them. Songs are repeated over and over, and the words remain in the same order. Videos can be watched hundreds of times - and they don't change. The melody does not require them to interpret information from voice quality or volume. We transmit a lot of information by how we say something, and where we put the emphasis. Sarcasm has no place in their world.

7.     They are very literal in their interpretations. Humor poses a great challenge in their world. Words with multiple meanings are very confusing.  Expressions like It's raining cats and dogs or crack the window pose a lot of confusion in their mind.

8.    Their sensory system difficulties include how things feel to their body. Clothing, shoes, cold, heat, touch can be perceived in a very different way.  They may refuse to wear a coat, even when it is cold outside. Or they may want their coat zipped up to the neck, and the hood tied tight,- even when it is hot outside.

9.    Some sights and sounds can actually hurt their ears or their eyes. Thus they cover their ears when they are in a crowd - a gymnasium - or a Mall or cover their eyes from bright lights, or florescent lights. A background buzz of a heater or ticking clock can drive them crazy - it may be much louder to their ears.   Thunder may actually hurt their ears - thus they are terrified of storms.

10.   Some of their fears seem unfounded to us. We can continue to tell them that a fly will not sting them or hurt them. That does not make the fear go away. I know if someone told me that a snake was loose in the room - but don't worry, it won't hurt you. I'm sorry, I could not concentrate or work in that room until the snake was caught and back in it's cage.

How Can I Possibly Parent this Child?

As you planned for this baby you had many dreams for this child. You have a beautiful baby - I believe more beautiful than most babies. Your child is just perfect - everything you ever dreamed s/he would be. Many of these kids, are extremely good babies.  They eat and sleep  - don't demand a lot of us. 

Don't get me wrong - some of these babies have sensory problems as infants and they rarely sleep - light, sound and touch seem to drive them crazy. You may be asking yourself - even more than other new parents, What have I gotten myself into?"

Generally these children develop physically right on schedule. No problems.  But as they approach their second birthday - you might start to notice that they are not talking yet. They seem to ignore you.  Sometimes it even seems that they might have a hearing problem. Every one assures you that all is well.  Some children just start talking later than others do.  However, some of these children talk like little adults, with amazing vocabularies. They know the alphabet at an early age, know all of the numbers and colors.  They can name every picture in any book. But they are not able to answer a question - except questions about their memorized scripts.

By two years old, you have had their hearing checked, and their hearing is intact. But my child is not talking yet. She/he really dislikes wearing most clothing - especially dress up clothes, or new clothes. You want to dress them up in new outfits for the Holidays - and they want no part of it. You go to family celebrations, and your child wants to sit in another room, under the table. Or sit and watch a video, rather than partake in the fun. Your child will only eat certain foods. The texture of different foods seems to disgust you child. You really have to tax your imagination to try to get proper nutrition into your child. Most other adults think your child is very spoiled and you give him/her too much power. 

What others do not understand, is that you are exhausted all of the time - very little fun is happening in your world. You do not seem to be able to enjoy your child.  You get together with other parents of young children.  You join playgroups, and gym classes or swimming classes. By the time you get out the door, you are exhausted, and you wonder why you ever thought this was a good idea. 

Some days by dinnertime, you just want to run away.  Your husband may be wondering What is the Big Deal?"  It is a big deal Dad. Your child's physical appearance is absolutely normal - so what could possibly be wrong.  Your wife must be over reacting.

If you are a Mom who stays at home, and works all day long with this child, and/or  siblings - you are worn out before you get out of bed in the morning. Likewise, if you work outside the home and your child is in a day care setting, staff may be starting to talk with you about social problems at school. Or, your child may thrive at day care, because of the school routines that do not change from day to day. You get home, and you seem to be dealing with a totally different child. You don't want to be rigid at home - and your child may be throwing one tantrum after another - at supper, bath time, hair washing, nail cutting, and bedtime. Even if this is your first child - you begin to notice that there is something different about your child.  You start comparing him/her to other children the same age - at school, the playground, in stores, etc.  Your child may seem oblivious to other adults and children.