Be Your Child’s Advocate – Know Your Rights

As a parent of a child with autism, and especially a nonverbal child with autism, you have to speak up for your child.  When he or she can’t speak, and everyone else around him or her is staring and things are uncomfortable, you have to speak up.  When your child is acting out in a manner that would terrify anyone else, you have to speak up.  You have to be your child’s advocate.

To be your child’s advocate means that you don’t have to get snippy or rude with others.  It does mean that you calmly explain to them that your child has autism, and this is what happens sometimes.  It also means explaining to them how to deal with it, and how not to deal with it.

  1. You have the right to share information about your child that helps others feel less uncomfortable or better understand what autism is.
  2. You have the right to not share any information about your child, if you think it isn’t in your or your child’s best interests to do so.
  3. You have the right to inform others that your child is fully capable of a task and you expect him/ her to do it.  They should not attempt to help unless you ask them to.
  4. You have the right to seek public legislature to change laws which may be perceived as discriminatory against your child.
  5. You have the right to pursue legal action against anyone who has treated you and your child unfairly or has hurt your child because of his/ her autism.
  6. You have the right to speak out and speak up against anyone who clearly does not know nor understand what autism is.  You must present yourself with good conduct, and not with vulgar language or hostility, because that will never get the message about autism across.  It will only make matters worse.
  7. You have the right to bring autism awareness to places where you and your child go, and where there is a deficit of this awareness.
  8. You have the right to assemble, march, rally or otherwise support causes and actions that would help your child and children with autism everywhere.
  9. You have the right to ask that your child be included in educational programs that are close to home and within your neighborhood school.  So many parents do not realize that their children are entitled to attend their neighborhood school and receive whatever services are deemed necessary for them to learn with their peers.  School districts can enforce and hinder parents into thinking that their special needs children have to be bussed across town to another school in the district when the neighborhood school is a few blocks down just because they don’t feel like hiring an extra special needs teacher or their special needs teachers aren’t allowed to leave one school for the couple hours he/ she will service children at another school in the district.  That’s baloney, and you can tell them so.
  10. You and your child have the right to attend church anywhere and be supported by the members of that church without prejudice and without any harassment.  God loved and healed the lame, the blind, the sick, and the feeble of body and mind.  His houses of worship should not treat you or your child like paraiahs, and that goes for any other place you and your child go, period.

You also should know, “Autism Awareness Day” “Top Twenty Support Groups For Autism” and “Agencies, Support Groups at the Ready For Your Autistic Child

History of Autism

Autism, per se, doesn’t really have a history. It is suggested that centuries ago, children and adults who were able to memorize or recite things they heard but couldn’t even speak their own names were the town idiots, fools, and morons. It is now known that in many of these cases, these children and adults were probably autistic, but the psychology of the day wasn’t exactly up to snuff as it is today.

In fact, psychology is a very young “science”, not really being studied or recognized until the mid to late nineteenth century. It was then that the likes of Freud and Jung began poking around the human mind to explain human behavior. But autism still wasn’t clearly understood as something separate and apart from mental retardation, and therefore the title of “idiot savant” was born. For another century, children and adults who were diagnosed as “idiot savants” were shut away in institutions because people believed they could not manage life on their own or even be taught. Again the idea that they were more retarded mentally than intelligent in some areas was quite pervasive.

This attitude persevered until the late seventies and early eighties when it was discovered that many institutions were regularly abusing their patients physically, sexually, mentally and emotionally. Institution life had been this way for hundreds of years but it wasn’t something that was discussed openly. Families who had wealth and secrets of children with “idiot savant” syndrome knew to some extent that institutions weren’t the nicest places to be. Some kept their children with disorders locked up at home while others, desperate for a way out from under the burden of their sick child, institutionalized them anyway.

After the Kennedy disability act went into effect, many of these institutions were opened up and the horrors exposed. People sought help to keep family members out of them at all costs, and “idiot savants” started to receive a different level of care, one which poked deeper into their savant skills to discover just what they were able to learn and not learn. As this area of psychological study advanced, it was still assumed that “autistic savants” as they became known, were still very rare and a psychologist or psychiatrist probably wouldn’t see a patient of this type in their lifetime.

As more in depth study continued, the spectrum broadened to include others which seemed to have similar characteristics but weren’t as severe. As the spectrum broadened, more and more doctors of psychology saw patients with autism. The “savant” aspect of the name was dropped in the late eighties and early nineties, as a sign of respect for these children and adults who had clearly been through so much already.

Now one in four boys around the world and an estimated one in six girls is said to have autism or autism like traits. It has taken our culture several thousand years to reach the point of understanding and diagnosing autism thus far and studies continue to try and find the cause behind it and whether or not there is a cure or preventive measure. Hopefully a complete understanding of autism won’t take us several more centuries to unlock, and in a generation or two from now we will be better educated than our predecessors were.

World Autism Awareness Day

Autism Awareness Day

April 2nd of every year is set aside so children, teens, and adults with autism can bring awareness of their disorder to the world. Many events globally on this day allow for everyone whose lives are touched in some way by autism to come together for support and enjoy each other’s company. Many find it comforting to know just how many others are struggling with the difficulties of having a loved one with this disorder. The many daily challenges parents have seem to disintegrate when the families find comfort in each other.

Local chapters of Autism Speaks sponsor the activities which have been wonderfully promoted and fiscally supported in the communities they reside in. New therapies, new treatments, new studies and even new findings on the causes of autism are shared at these local and international gatherings for Autism Awareness Day. It has become such a huge success that Autism Awareness Day has recently become official, so that all the efforts of the parents of these amazing kids can be recognized.

If parents and friends of families dealing with autism can’t attend the events on Autism Awareness Day, the postings for other events as well as what is discussed and learned at major events is found on the Autism Speaks website. Parents can find a lot of helpful information and very useful resources here too.

Autism walks are part of the festivities. Donations are collected, much in the same way they would be for breast cancer walks or Jump Rope For Heart. Then walkers have to walk a specified distance to show their support. Donations can be made directly without walking. Go to  www.walknowforautismspeaks.org and click on, “Make A General Donation”.

Toys R Us, an international toy chain, gets in on the action too. Every Feb, March and April, the toy store collects donations from shoppers for Autism Speaks and presents the non-profit with a very large check on April 2nd to help with any and all costs associated to the awareness, testing/ screening, treating and clinical research for autism. A very valiant gift from a company that understands children, Toys R Us does its own part to make everyone aware at the checkouts this time of the year.

The Autism Society of America has been creating its own awareness since the early seventies by promoting Autism Awareness Month. Their activities have spawned several more autism societies and awareness groups in the last forty some years. They also have a website on which they post everything related to autism and the events and activities going on during Autism Awareness Month.

It’s important to note that both the day and the month for Autism Awareness aren’t just about autism or those that have the disorder. It’s about the families and the friends. It’s about educating a public and reaching out to those that don’t know much about autism and teaching them everything there is to know and how to accept people with autism for their uniqueness and not in spite of or despite the disorder. With the changing diagnostics for disorders on the spectrum beginning in the DSM IV 2013, due out next year, it’s more important than ever that awareness goes from awareness to knowledge and understanding. The more people that know and get involved the more likely it is that autism research can find a cause, if not a cure. Even so, most parents will tell you they would never change their autistic child if a cure was found; they just would like to know what caused it so they can explain it to their children or to others.