You Are Your ASD Child's Parent - and Advocate!

"The psychiatrist has told us that our son Travis has Autism (high functioning). Should my husband and I tell other people, for example teachers, that he has this? I'm not sure if making others aware of this will make it better or worse for Travis."

The short answer is 'yes'. Most (but not necessarily all) of the people in your child's life should know of his condition. And since you are the expert on your son, you should be the one to explain it. Your job is to advocate for your child, and you can't do this if you keep everyone in the dark about what is going on.

As a parent, you’re the one who has spent the most time with your child and, with or without a formal education in Autism Spectrum Disorders, you have already figured out what works and what doesn’t (or are coming close to figuring it out).

As an expert on your child, you may find yourself being his advocate all the time. Much of this advocacy happens in the classroom. You’ll need to tell your child’s teacher what techniques work best, what triggers him, and what calms him down.

If you find that the school system is just dragging your son along without actually educating him, you’ll need to advocate by talking to the the principal, superintendent, or even a lawyer. It may take all of these people to get the school system to take your child’s education seriously.

You may choose to spend a little time observing or volunteering in your child’s classroom. This can help you see what’s going on, and can provide you with the information you need to be the best advocate you can be.

You may also need to be your son’s advocate with your child’s doctor(s). Too often, they spend just a few minutes with a child, thus they may need to hear from you the reality of what’s going on in your household on a daily basis. Prepare yourself with a list of questions and comments to share with the doctor when you meet with him/her.

You may also need to advocate for your child with the public that still doesn’t completely understand Autism Spectrum Disorders. If, for example, you want your son to join the Boy Scouts or take piano lessons, you’ll need to explain to people about his condition and tell them what they can expect when working with him.

Some people, including teachers, can have some trepidation about Autism, and some don't fully understand the severity levels of the disorder. As a result, they may shy away from dealing with children who suffer from it. With your honest and forthright advocacy, you can teach others about this disorder - and specifically about your son so that he gets the best care and education possible.

What other parents have had to say on this topic:

•    Anonymous said...  When they know It gives everyone a better understanding. My daughter is going into 3rd grade and both her and i could not have done it without the teachers support.
•    Anonymous said... Absolutely! but be sure to tell them this is the reason he behaves the way he does but it's not an excuse for any bad behavior. He will obviously need more structured and repetitive reinforcement of what the correct way to behave is but at no time should you ever say..oh he only does that because he has Aspergers.. The more information you can get and give, the easier it will be for you and everyone involved in your sons life to understand him better
•    Anonymous said... Absolutely! Yes! It'll get him the help he needs in school.
•    Anonymous said... Absolutely!! Your son needs special support in class and at home. My daughter has Aspergers and ADHD. She had a very hard time in school last year, but with the help of her teacher, guidance counselor, school psychologist and special needs services, she made wonderful progress. Social skills groups are also really helpful.
Good luck!!
•    Anonymous said... Absolutely. I have grandchildren who have been diagnosed with Aspergers Syndrome. Two have along with it. And the oldest has Tourettes along with his. The first and foremost thing that needs to occur is to teach him and yourselves everything you can find out about his special circumstance. So that all of you can grow with his needs. Then teach him never to never to be ashamed of who he is. His confidence will help him through challenge he may face. Embrace him for who he is and assist him by never letting him feel like he needs to hide who he really is as a person. Blessings to you and your child on your journey.
•    Anonymous said... better ...socially it explains a lot -my son got kicked out of 1st grade ...doing much better now that he & his teaches have a plan & extra help when necessary...
•    Anonymous said... Definitely! He needs an IEP (individualized education plan) and hopefully an understanding teacher and other faculty members. He will have special needs to get the education he deserves and being silent won't help him get those. Speak up on his behalf and best wishes.
•    Anonymous said... Definitely! People can't be understanding & supportive if they don't know. If he struggles at school at all you'll want an IEP to set up support for him.
•    Anonymous said... For those who asked, in Section 504 of the Rehabilitation Act of 1973, a student qualifies for a 504 plan if he or she has a diagnosis (physical or mental) that substantially limits major life activities (such as learning). In my daughter's case, she already had a gifted EP. We did not want to drop that for an IEP (you can't have both). Her diagnosis of Aspergers, anxiety and Irlen Syndrome (a type of visual stress) qualified her for a 504. We asked for a meeting with all of her teachers and her guidance counselor. They approved accommodations for extra time on tests & assignments, testing In an alternate location if needed, use of a colored overlay for reducing visual stress and preferential seating in class depending on her needs. Also, since the teachers are aware of this, they tend to pay more attention to her and let me know when she's not having a good day. Also, it does not have to be reviewed every year, only if there are changes. I hope this is helpful, it has been invaluable for us!
•    Anonymous said... I find it helps people see my son w/ understanding rather than judgement.
•    Anonymous said... I talk to his teachers at the start of every year. It is nothing to be ashamed of so why hide it? He is also not allowed to use it as an excuse for his behavior though. They can support him best when they know his diagnosis. I also want them to know he is on meds for his ADHD in case something happens and they need to call the ambulance. He is pretty clumsy.
•    Anonymous said... I tell everyone that way they understand and help my 9 year old son in saying that his school has a seu on site as well
•    Anonymous said... I'm curious to a lot of things here, like, how old is your child? Has he struggled in school in the past? Does he have great difficulty with his peers, teachers, etc?
•    Anonymous said... It would be difficult for teaches to work with your son if they do not understand his unique ways. My school, teacher, Vice principal work with me & my sin.
•    Anonymous said... Speaking as a parent who only recently had our son 'diagnosed' with Aspergers, I would advocate telling all involved with these unique children. Our son is 14 , and we have experienced years of phone calls from school re 'meltdowns' and other behavior issues as we were ignorant to his unique 'wiring' and while parental instinct helps to negotiate how best to help your children, the teachers and 'bullies' didn't have the same understanding.Now the school is aware, wow! The change in attitude and teaching styles have been extraordinary- much more understanding and positive - We need to advocate and destigmatise - with understanding comes empathy- You wouldn't hide information about a child with Diabetes or Anaphylaxis!
•    Anonymous said... Tell them. Communication is key. And get an IEP-it offers built in protections as well as services. More schools are doing education training on autism, so if the school personnel know you will have a lot less headaches in the future. Trust me--I am a parent of an Aspie and a teacher!
•    Anonymous said... Yes yes!! Please share with the teachers it will only help with understanding and get him the help he deserves!! My son has Aspergers and sensory issues. He has an IEP and he is mainstreamed and doing great!! I agree with all the other comments as well!
•    Anonymous said... Yes! My son has an iep and it works great for him. The teachers understand and are trained to deal with them better and it runs alot smoother. The teacher my son had. Keep in contact with me during the day via text. If she noticed something she would text me. And i would give her different options on how to do things. It went easier during the day.
•    Anonymous said... Yes!!! If you don't have an IEP, you need to have a 504 asap. It has been absolutely essential for my daughter (high functioning Aspie and gifted student). It allows her extra time on tests/assignments and she gets preferential seating (away from noise or disruptive students, etc).
•    Anonymous said... Yes, people are more understanding when they know and he can get the support he needs. I know it has benefitted my son and he has gotten the extra help in school he needs
•    Anonymous said... Yes, tell them. Nowadays, it is looked upon in a positive light. My son was having issues with his teeth, but he did not want to go to the dentist. But, when we explained it to his awesome dentist he immediately said so many complimentary things about Aspergers. That made him want to go back for every appt. Thankfully, now his teeth are beautiful! People aren't as closed minded about it.
•    Anonymous said... Absolutely tell them - tell his teachers, his childcare providers, any summer camp counselors, sports coaches, et al. It gives them a window into his world and that's a good thing. And just know that this doesn't make Travis anything other than an amazing and wonderful child who just happens to have some extra "add-on features". My son, Carson, used to ask me, "Mom, am I weird? Cuz kids think I'm weird." I would say to him, "Yay! Yay for being weird! Yay for being different! You will help make the world so very, very interesting! Don't you ever think for a moment that there's anything wrong with being different." Now he tells people quite readily that he has Aspergers! When they ask him what that means, he says, "Oh, it just means that my brain works differently than yours."
•    Anonymous said... I think one of the key things is to discuss it with him. Ensure he understands what ASD means for him and that he has strengths and difficulties. Ask him if he wants others to know and explain who and your reasons why. The staff at my sons school know but he has chosen for his friends not to know - I imagine a couple of them do as their parents know. He should be consulted though as it's all about him.
•    Anonymous said... I would make them aware hunni, then they are equipped to deal with any extra support he may need x
•    Anonymous said... It protects him if he has anger outbursts... Better to protect him than let him be considered the anti social angry kid
•    Anonymous said... They do need to be aware, sometime you might need an IEP for him
•    Anonymous said... they need to know so he can get the best care & tell them about any little "quirks" so they can't be misinterpreted as him being badly behaved, not listening, etc.
•    Anonymous said... We have had nothing but support. It's not something to feel ashamed about. It's a gift. I know it's hard to see that now but it is. Kids like this see the world differently then others. The things my son comes up with just make me laugh. We have our bad days but we are starting have a lot more great days. Try ability th ey have found it helps. My son has the anger and aggression type of aspergers. Just keep researching and talking about it. It will all be okay
•    Anonymous said... yes, tell them, otherwise you may run the risk of people jjust thinking he's a 'bad' or 'naughty' or 'disruptive' child

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