Your Advice Requested: Disclosing Your Child's Asperger Syndrome
Thursday November 13, 2008
When your child has Asperger syndrome or High Functioning Autism, you walk a fine line. Sometimes, under some circumstances, your child is perfectly capable of behaving typically. Other times, not so much. And it's not always easy to predict when things will suddenly become overwhelming.
If you tell a coach, scout master or friend's parent "my child has an autism spectrum disorder," you may set your child up to be excluded or treated differently. If you don't tell, though, there's always the possibility that a sensory issue or misunderstanding could lead to real problems.
How to Explain Your Child's Asperger Syndrome includes hints and tips on disclosure from experts including an adult with Asperger syndrome. But the article is just a start. Scroll down to the bottom of the page, and add your best suggestions by typing into the green box!
Comments
if i had a son named “jack” who had asperger’s, under the circumstances posited i’d say “jack is normal, but he as asperger’s.”.
the message is clear: ‘be comfortable,”jack” is normal, but if and when he isn’t behaving “normally”, (please) remember that he has asperger’s.’
if clarifications were necessary, i’d attempt to make them, but i’d always try to leave the subject with the short, complete thought that ‘”jack is normal…”
regards,
Unfortunately, every child with Asperger’s will someday be an adult with Asperger’s. I am an adult professionally diagnosed with Asperger’s, and I once experimented with letting my fellow workers know I had Asperger’s, and the results were disastrous; I was immediately treated like I was retarded. This was a stunning contrast to the way I am usually treated (like an oracle). I feel a better strategy is to tell the teacher/coach that the child is geeky and acts weird with everyone, “don’t take it personally”. Do not imply you tolerate the unusual behavior, and encourage working together to change unusual behavior, because someday that child has to be an adult and get a job and interact in the workplace. I have had several siblings and children on the autism spectrum, and their relative success in their life and careers has been proportional to their willingness to “act normal”, not defy authority, and not let distractions prevent them from finishing both short term tasks and long term goals. (By standards of family, income and career recognition I have been extremely successful). If it is broadcast in youth that a child has Asperger’s, it will likely be impossible to erase that label, and the child will be stuck with that albatross for life. In the “good old days” before 1994 when no one had heard of Asperger’s, mis-behavior was not tolerated, and my siblings and children were often placed in gifted and talented programs as their savant-like specific talents were recognized. Today I fear these same caliber students are undisciplined and getting put in padded rooms.
although i do not speak of it, my presence on the spectrum is widely known by those who know me, and i am also somewhat more than slightly successful in life; to the extent that they’re concerned at all, those who know me are far more interested in what i can do that the limits i have to work with.
one’s personal response is a personal choice, but it is a choice that should not be made without including in the balance the fact that silence fosters ignorance and fear
my position remains: ‘normal, but with asperger’s…’
regards,
My oldest son has “classic” autism. He struggles with communicating and socializing. My youngest son is also on the spectrum. While he does receive special ed services, he could “pass” as normal, with most people thinking he is a little quirky or eccentric. I have not broadcast the fact that he is on the spectrum to scout leaders or sunday school teachers for precisely the reason a previous writer mentioned; because I’m afraid he will be branded for life. Once it’s out there it’s out and I’m afraid people would treat him differently. He’s 8 and I don’t know if I’m handling it the right way or not.
I agree with the previous writer who is an adult with Asperger’s Syndrome. I told my neighbor that my son was a “little autistic”. Every since then her children have started fights with my son on the bus and in the neighborhood. It got so bad that my husband and I would keep our son in the house. Since then we have moved. I don’t tell our neighbor’s “who my son is, someone with Asperger”s, but I’ve said to them “he a typical teenager, a longer at times and he’s in the 8th grade”. We are trying to give our son examples of how to function when he is apart from us.
My 8yr old son has “classic” autism (non-verbal, repetitive behaviors,developmental delays, digestive system issues, etc.) and my 11yr old daughter is very high functioning. A pediatric neuropsychologist has stated she is on the autism spectrum but did not officially give her a diagnosis of Asperger’s Syndrome.( I don’t have a problem with that). In the last 2 IEP meetings concerning my daughter, the school adjustment counselor and the special education teacher started using the term asperger’s. I think, just because it’s easier or shorter and sums up what they feel they are working with. In her classroom and when she does things with her friends, we don’t make a point of explaining things or making any excuses. I don’t want her peers to judge her any more than they already do for her “quirks” or the things that make her “different”. The kids don’t care and the experts all differ in how they distinguish autism vs. asperger’s vs. PDD-NOS.
I guess, what I’m trying to say is the label or term or diagnosis is more important for adults who like to have neat boxes for things in their mind. When talking to children, it’s fine to talk about our differences because it’s so important to teach tolerance of everyone’s differences. It is better to ask and learn than it is to wonder and be afraid.
Hi, all:
Before my son learned skills to help him pass as “normal” (whatever that is!), we started our practice of mentioning his needs and his strengths in a given situation. For example, “My son is very interested in all the facts about the zoo animals, but he needs you to ask him directly because he won’t volunteer information. Give him time to process your question and come up with his answer.”
Only once have I really wanted to blurt out his diagnosis, when a Mom at the library storytime gave me a dirty look and commented, “that behavior is completely inappropriate.” Of course I thought of a great comeback after we came home!
For the most part, people have responded well. I usually tell people if they ask outright, but otherwise it’s too much for people to handle: they don’t know what autism really is anyway.
I have a 5 year old diagnosed last year. She is very high-functioning however does exhibit some quirks and sensory issues. She is currently using a deep pressure vest in school and the kids in her class think nothing of it. They treat her with respect and enjoy playing social skills games with her. Of course, we have a positive situation now but she will be an adult and she needs to be comfortable and confident with herself, that I feel will help her with those who are less understanding. If only everyone was so open-minded and tolerant to differences. Perhaps one day…
I think you have to assess the situation, inform those who need to know and provide an education to those who may not deal with autism on a daily basis.
My son wasn’t actually diagnosed until he was in the middle of his freshman year at the University of Michigan. I knew that he was shy, and had a very high I.Q., but that he was autistic had not occured to me, since I’d had him in therapy several times for depression, with no A.S. diagnosis. Then, while describing some of the difficulties I’d been going through with him to my brother, a psychologist, he told me that my son was an ‘Asperger’s Person’, rather matter-of-factly at that, and after my disbelief and thinking that my brother was wrong, I googled asperger’s and came up with a list of symptoms, almost all of which my son had. However, it wasn’t until a rather innocuous argument during which I said that “Stupid is as stupid does”, I discovered that one symptom, or, rather, as I’ve come to find out, hallmark, of Asperger’s, is their ability to suddenly fly into a rage and strike out with alarming fierceness if they perceive they are being mistreated, case in point, my pointing out that certain actions or inactions were “stupid”, thus saying that HE was stupid by inferrence.
I’d witnessed his anger and self-inflicted pounding of his fist into his leg or palm before, but never as a result of, or, because of something “I” had said or done, but in his describing some other person’s slight of him or perceived slight. I’d never, however, felt afraid of him personally, until that day. The incident also frightened him, as he had never realized that he had violent tendencies, always thinking that they were the result of low intelligence or morals. I’ve had to calm him down many times in the meantime, usually over the phone while he’s away at school, hoping that his dorm neighbors won’t feel threatened and alert the authorities that he may harbor the same violent streak that the VA Tech shooter did, or of other school shooters, all of which were concidered “loners”, a description Asperger’s People fit to a tee. I have also dealt with his depression and threats of suicide, something that his mother, (an un-diagnosed Asperger’s Person, in my opinion,) succeeded in when he was only 8. I’ve had him in therapy while at Ann Arbor, but he’s since quit going, and being an adult, is perfectly within his rights to do so. I have had to alert school personnel of his Asperger’s and inform them of his inability to seamlessly fit in, or even to afford himself of opportunities that other students readily will, because it would mean calling attention to himself and his condition, which he, naturally prefers not to do, as he feels it would limit him in the eyes of others. What’s difficult to explain to him is that in certain circumstances, it would behoove him to alert others of his condition in order for them to understand his behavior or explain why he did, or didn’t do something, an action or inaction that might obstruct his furtherance academically.
I recently viewed a video of a student pummelling a school bus driver because he didn’t like the way she was driving, and felt endangered by it. It was later learned that he suffered from autism, the form of which was not disclosed in the report, but was a high-functioning form. I now feel that parents that don’t inform school authorities of their child’s autism, (something I’ve done since discovering it), are playing with a ticking time-bomb. It’s not easy to think of your child as someone who has the ability, or the inclination, to harm others, but in the case of autism, the child isn’t able to understand the ramifications of their condition if left without any therapy or even a good talking to about the latent tendencies towards violence given the wrong circumstances. At least if the school is aware of the condition, the authorities can decide on a course of action, or inaction, if they so inclined. The child is the important one in this scenario, and how they are treated by faculty and those whose jobs it is to assist the students with disabilities, is dependent on their knowing the situation and that is up to the parents, since the student, in all probability, not going to do so.