Today April 2nd 2014 is World Day of Autism!!

Marquito with Principal Lorraine, Miss Sally and nurse.  My family and our team will glow in blue t shirts for Autism!!

A day to illuminate everything in blue to show your support!! 

We admire, love and respect anyone with Autism and we are proud and happy to share this feeling with our dear Marquito!!

Today April 2nd 2014 is World Day of Autism. A day to illuminate everything in blue to show your support. It’s a day of learning about the dual diagnosis of Down Syndrome and Autism combined in one person.

My family and our team will glow in blue t shirts for Autism.

We admire, love and respect anyone with Autism and we are proud and happy to share this feeling with our dear Marquito.

I am more relaxed in knowing that around the world there are other parents like me.  When you have a child with a disability your life is transformed and you can feel lost and alone and left behind.  You need to try to help your child.  You need to love your child with Autism and feel proud to live with him daily.

In January 2008 the General Assembly of the United Nations declared April 2nd World Day for Autism Awareness to highlight the need to help improve the lives of children and adults with the disorder.  Since then, we are more extensively aware and celebrate this day from different parts of the world with a multitude of events and symbols that help increase the visibility of the TEA in society.

The WAO (World Autism Organization) issues each year a commemorative manifest this day of  April 2nd. It will be read in many associations and public places.  In 2012 a proposed revision of the Charter of Rights of Persons with Autism was adopted from the European Parliament in 1996. It highlights the important role of the internet in the communication and implementation of collaborative actions related to ASD along with many other topics.

One of the initiatives over the years is to gain more strength and outreach along different corners of the planet in the Light It Up Blue, sponsored by Autism Speaks, which proposes the use of identifying color of blue as the World Day Awareness of Autism...  What is wanted is the promoting of the color blue either by associations and persons involved by use of blue clothing or lighting up buildings or monuments in blue in different parts of the world.

My family lights up for blue for Down Syndrome and Autism Spectrum Disorder. 

During the past 13 years I have seen hundreds of children with Down Syndrome.  They all have their own strengths and weaknesses and certainly their own personality.  I have not met a parent who did not care deeply about their child.

Some families that stand out in my mind are those who are deeply distressed by no change in behavior or development of their child.

Their described worry is that their child has stopped leaning with no signs of developing speech.

Examples:  Repetitive motor behaviors such as fingers in the mouth, hand clapping, the fascination with looking at lights, ceiling fans or their own fingers / hands moving.

Also extreme rejection with swallowing food, receptive language problems (poor  understanding and use of gestures) and the appearance that the child does not hear.

The spoken language can be very repetitive or absent.  Children experience a dramatic loos (or stagnation) in their acquisition and use of language and social skills needed.

This regression in development may be followed by excessive irritability, anxiety, and the occurrence of repetitive behaviors.

This situation is most often reported according to parents, this regression occurs most often between the ages of three to seven years.

Along with these behaviors other medical conditions may also be present including seizures, dysfunctional swallowing. nystagmus (constant movement of the eyes) or severe hyptonia (low muscle tone), with delayed motor skills

Some families do their own research and report their child may have an autism spectrum disorder (ASD) along with Down Syndrome.  Others have no idea what is happening.  They do know something is wrong and seek answers.  This article is for families in situations like this.  If your child has been diagnosed dually with Down Syndrome and Autism Spectrum Disorder (SD-ASD) or if you believe your child may have ASD, learn all you can about this and what it means.  We are all learning through data collection and ideas for the evaluation process.

 There is little written in the form of research or comment about SD-ASD.  In fact, until recently it was believed that they could not exist together.  Parents were told that their child had Down Syndrome with severe to profound cognitive impairment without further investigation or intervention in a case of diagnosis.  Today the medical profession recognizes that people with Down syndrome may also have associated psychiatric diagnosis such as ASD or Obsessive Compulsive Disorder (OCD).

Because of this philosophy is relatively new to the medical and educational professionals.  Little is known about children and adults with DS-ASD medically or educational.

ASD includes:

Communication (use and understanding of words spoken or signs)

Social skills (related to people and social circumstances)

Repetitive body movements or behavior.

Of course there is no inconsistency in any of these areas of all children, especially during early childhood.

Children with ASD may or may not have all these features or will constantly demonstrate their skills through similar circumstances now.  Some of the variables of ASD we have commonly observed in children with DS-ASD are:

Unusual response to sensations (especially sounds, lights, touch or pain)

Food refusal (preferred textures or flavors)

Unusual play with toys and other objects.

Difficulty with changes in routine or familiar surroundings.

Little or no meaningful communication.

Disruptive behaviors (aggression, tantrums, or extreme failure)

Hyperactivity, short attention span and impulsivity

The self-injurious behavior (skin pinching, head hitting or striking and eye poking or biting)

Sleep disorders.

History of developmental regression (esp. language and social skills)

Sometimes these features are observed in other childhood disorders such as hyperactivity disorder attention deficit or obsessive compulsive disorder.

Most parents agree that serious behavioral problems usually cannot be easily fixed.  Finding solutions to behavioral problems is one of the reasons families seek the help of doctors and specialists in behavior.

Compared to other groups of children with cognitive impairment, people with Down Syndrome, as a group, are less likely to have behavioral or psychiatric disorders... " Dual Diagnosis"  When they do, it’s a good idea to have a professional consider a dual diagnosis such as:

(Down Syndrome with a psychiatric condition such as ASD or OCD) because :

 You get medication or behavioral treatment and a formal diagnosis may entitle the child to education services and more specialized and effective intervention.

 If you think your child may have a disorder ASD, share this with a professional before or during evaluation. Do not wait to see what might happen.