A Note To Our Readers: Welcome to our BBB Guides,
a series of documents by parents, for parents on various topics.
When searching the web, I could find little in the way practical
solutions to issues like handling Halloween and large family gatherings.
Our message board, however always contains such fantastic tips offered by
our experts: parents of children with ASD.
These are parents of various ages, their children are affected with
various severities and they are all different ages.
About half of our contributors have more than one child on the spectrum.
I hope you enjoy this guide and the upcoming series; and
that they are helpful to you. If
you would like to contribute to or have ideas for future guides, please email me
at bbbautism@deaknet.com.
Thanks to all our great parent-contributors. It couldn’t
be done it without you!
Note: Our children are referred to as
first initials only and we don’t include last names. We never publish these
comments without permission from the contributor. Husbands/wives are not
mentioned by name either.
BBB Autism Online Support Network: http://www.bbbautism.com/club_front_page.htm
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liz@deaknet.com
TELLING YOUR
CHILD
By Khris
I
think that I knew from the moment that we had a definitive diagnosis that at
some point we would tell our son about his condition. Being a self-diagnosed,
adult recovered “Aspie”, I would have loved to have known growing up that
there was a reason for my "quirks". I would have savored a group of
similar young adults, or even a "label" to research. I want my child
to be proud of who he is, including his Asperger's Syndrome. There are quite a
few books written specifically for ASD kids to explain to them, there is even a
workbook for young adults to use to discover more about how they tick. I feel
it's important not to use a label as a crutch, but also not to hide it as if it
were shameful. I hope that one day my son can laughingly say "Can you
believe they thought I was Autistic when I was little??"
WHEN,
WHY AND HOW TO TELL YOUR CHILD
By Chris
Prior to attending the Tony
Attwood conference, I had already begun talking about autism and Aspergers with
N. I strongly felt that it was as much a part of him as those beautiful piercing
blue eyes. I was reassured listening to Tony Attwood discussing his experiences
with children and adults with the diagnosis. His philosophy was explained as,
the time to discuss it is when the child realizes they are different (and they
all do eventually he said) and begin talking about that. He said this usually
occurs between 7-9.He suggested explaining it from the perspective of the fact
that we all have strengths and weaknesses and to discuss our own also.
Presenting it from that perspective and stressing the many abilities they have.
Discussing their difficulty with social issues but their many strengths. He
suggested many books about children who were different, yet as adults made
wonderful contributions to society. There is a series titled Children of Genius
by Ibi Lepscky featuring stories of different children Albert Einstein, Pablo
Picasso, Amadeus Mozart, and Leonardo da Vinci and what their experience was
like as children. He said it was important to focus on role models for them as
heroes of ability. “Aspergers, What Does It Mean to Me?” http://www.autismtoday.com/aspergersbook.htm
is a wonderful workbook that explores this with a child to give them
insights of what it means in their life. Nick knew I attended the conference and
what it was about and when I got home that night he said to me, "So, what
did you learn about Aspergers?" I asked him why and he responded with,
"Well, I would like to learn about myself."
RESPONSE!
By Lynn in BC
Should you tell your child and how? Yes most
emphatically a YES! I am currently taking a course about raising a child with
special needs and one of the first things they said was to let your child know
about their special need. Children who know what is going on with them thrive
better than those who do not! It is like forewarned is for armed! The more you
know the better equipped you are to deal with it! In my circumstance the
difference in my son before he knew what he had and after he learned what made
him different was phenomenal!
How did we tell him? We sat him in the psychologist's office
and had the Doctor explain what HFA/Asperger's is and what it meant in him. Then
we bought a book called "Asperger's, Huh?" http://www.aspergersyndrome.org/books_childrens.html
which has been an incredible help for him.
The difference can be measured. Honestly! In grade four
there was no diagnosis, no rhyme or reason for his behaviour and he struggled so
hard in school. He learned his diagnosis between grade 4 and 5 and in Grade 5 he
thrived. He knew why he was different so when he would not be able to do
something he had a name to use but he also knew that it meant that he had to
work harder and he does! He has the same teacher this year (grade 6) as he had
in 4th grade and the teacher is absolutely stunned by the level of maturity and
confidence my son has achieved! He says there are others in the class who are at
the same level they were in grade 4 yet my son is absolutely changed!
THE
BEST THING I EVER DID WAS SHARE THE DIAGNOSIS WITH MY SON!
By Paula
My son was told he has autism in 5th grade. We had moved to
a new town, and I wanted him to understand why it might be difficult for him to
make friends. I also wanted him to understand why some things came so easy to
his younger brother, and seemed so difficult for him.
He recently asked me why God gave him autism. I told him that he got his autism
from me. Although I have never been diagnosed with any form of autism, I am able
to look at my life and see that some of my social behaviors point in that
direction. Both my father and sister are classic Aspergers. By sharing this info
with my son I created a bond with him that he wears like a badge.
When things go wrong for him socially, he is the first to say, "I don't
think I said that the way I meant to. You see, I have autism and sometimes my
brain works different. I got it from my mom."
In contrast, I know a family who has a 14 year-old son who has Aspergers. They
have decided not to tell him. This poor boy knows he is different, but not why.
He is depressed and has no friends.
I want my son’s friends to treat his autism like you would any other
"difference". Just like a child with diabetes can say, "no thank
you, I'm diabetic", to the offer of sweets, my son can attribute a social
mistake to his autism. I want his friends to say "that's D for you"
and accept his difference unconditionally.
In making D's diagnosis public we took a risk. I was very fearful, but knew in
my heart that this was not something to hide. It is amazing how much information
I have received from others just by letting it be known.
FREELY DISCUSSED
By Becca
We never actually sat M down and told her she was Autistic but
the fact was an open matter freely spoken about in the household and with
relatives. I can't imagine living in an atmosphere in which it was any
different. It’s very healthy for the family, especially her siblings to be
able to discuss the matter openly.
At the time of the diagnosis we told our other children immediately. It gave
them a sense of understanding that she was different. It also gave them a sense
of peace where they lowered their expectations for her being a normal sister.
Now they had a reason why she was as she was. The word Autism itself helped them
adjust to who she had always been and who she would become.
As for M, ‘Autistic’ is just another part of who she is. She knows that this
means that she is different from most other people. She knows that there are
other Autistic people in the world. At this point in time she has shown no sense
of shame whatsoever at being Autistic or of being the very unique individual
that she is, especially in the school environment. This is partly due to her
personality and partly due to an accepting environment that she has experienced
from her entire extended family.
It is my belief that shame needs to be learned and if the child isn't taught to
be ashamed of the word Autism no shame will come about. However, there is only
so much that can be accomplished within the boundaries of the family. Outside...
school, other children, society itself can unfortunately fight all good work of
a family threatening to instill shame where no shame ought to be. But whether a
child is aware of their Autistic label or not there is nothing that with
prevents society from inflicting this shame. However hiding the truth from the
child will increase the sense that there is indeed something to be ashamed of in
being who they are.
A DIFFERENT PERSPECTIVE
By Becca
Hmmm. let’s see if I can say this right... but as a
labeled child (Minimal Brain Damage they called it at the time) who never
appreciated knowing that label and never will, I can definitely offer an
alternate perspective.
First off I feel comfortable with M knowing that she is autistic partially
because she doesn't really know what that means. Nor does she understand other
people's inner reactions to that word. The openness in the family about Autism
has been more for the benefit of my other children than for M herself. Were she
to become more aware in the future I cannot guarantee that she would not
experience immense discomfort at knowing her differences.
Secondly I would like to say that knowing one's label can become a
self-fulfilling prophecy. A person Autistic or not is far more than the label
that they have been given. But as a labeled person myself just knowing my labels
limits me inwardly. You see I was taught that I was brain damaged and thus
incapable of achieving certain things.
When anything was inconsistent with that label I didn't need anyone to
discourage me I limited myself. Being anything but that label made me feel like
a fraud. It also stopped me from asserting myself and pushing my limits to the
max. Furthermore it instilled a deep sense of inferiority where I knew before
trying I had already failed to measure up. Were I to go back all those years ago
I would never have wished to know my label and would have appreciated it greatly
had it been kept from me?
I think situations and circumstances are very different from one family to the
next. An individual child's needs, personality, and self-esteem have to be taken
in mind when considering telling them that they are Autistic. Also the family
should be well prepared to support that child and help him/her as he/she goes
through the grieving process. I think too if one or both of the parents has any
unresolved feelings concerning Autism they should deal with their own issues
first before expecting their child to adjust in a healthy manner to the news.
WE
AGREE IN NOT
TELLING
By Jen D
He already struggles with low self-esteem and the last thing
we need to do is to give him an excuse to exercise inappropriate behaviors and
our patience or just another excuse to NOT clean his room. lol
UNABLE
TO TELL THE DIFFERENCE
By Brian
I don’t know where I fall into this category, but K
doesn’t currently have the capacity to understand it if I told him, but I am
glad that some of the kids here do have the ability to understand what y’all
have told them. My own parents chose not to tell me all about my operation that
I had when I was only 18 months old and faced with death or at best life in a
wheelchair. Fortunately the doctor that did the surgery didn’t believe in
either alternative. Hope I didn’t confuse matters more and I really respect
each of the parents here for their decisions in a tough decision
MY FEELINGS, MY SON
By Liz
We have always been totally open about our son’s autism
(his 8 year old sister asked me 3 years ago what the DSM-IV criteria is for
Autism Spectrum Disorder, lol) to friends, family and strangers.
I believe the only way people can begin to understand autism is if they
see individuals with ASD in their community – and become familiar.
Many people (especially children) will ask me questions, which I welcome.
I am all for spreading autism awareness.
When it comes to my son, well, our experiences are similar
to Brian’s in that I am not sure how aware he is. But I still talk to him and tell him things because, you
never know how much might be getting through. I do feel that hiding it promotes
shame and I would like to encourage pride in all aspects of his personality.
Autism is so much a part of who he is, just like his blue eyes. He has a
right to know.
That is not to say that if he had less challenges I might
feel differently. Perhaps that
knowledge would hold him back or depress him. But I can’t say for sure,
because he isn’t HFA. As
mentioned before, this is a personal decision and needs to be based on the
child, not what others think or do.
I just believe that if I want other people to accept him, he
has to learn to accept himself.
Please note: The information contained within this guide and
the other BBB Guides are not the advice of a physician.
This Guide contains strategies, tips and opinions as offered by other
parents of ASD kids. Always seek medical advice.
BBB Autism does not recommend any particular therapy/intervention, but ALWAYS endorses your right to be INFORMED!!!
OTHER BBB PARENT GUIDES
CONTAINS
PRACTICAL INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail liz@deaknet.com and ask for: (now available in PDF format) also available on our website at: http://www.bbbautism.com/bbb_guides_contents.htm.
1. Halloween
2. Epsom Salts (and calcium) - expanded version
3. Epsom Salts - condensed
4. Pros and Cons of telling your ASD child his/her diagnosis
5. How we advocate for our children
6. Guide to holidays and large family gatherings
A notice to our readers...
The founder of the BBB Autism support club is not a physician.
This document references books and web sites that may be of interest to the reader. The founder makes no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these web sites or in the books, and specifically disclaims any liability for any information contained on, or omissions from, these books or web sites. Reference to these web sites or books herein shall not be construed to be an endorsement of these web sites or books or of the information contained thereon, by the founder.
The founder reserves the right to make decisions as to whether contributions are appropriate with respect to content, length, etc. We will not publish offensive material using foul language, or contributions that are inflammatory or disrespectful to decisions by other parents (i.e. therapies). We do not generally accept contributions if they are ads for private service agencies/clinics. We are also unable to accept contributions after an issue has been completed. We reserve the right to edit content, but will inform you in advance if we are going to do this.
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Autism – 2001
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