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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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Question

My 7-year-old and soon-to-be step son never (never) stops talking and says everything he thinks. It is SO bad - (as is his severe interrupting) - that it is seriously affecting me and my boyfriends 3 year relationship. When we met he only had bi-weekly visitations. Now he was given full custody as his biological mother and her new husband cannot handle it. I am exhausted and cannot get a word in edgewise. BF says he is "used to it" and I just need to be more patient. Does the one-sided verbiage get better or worse with age? How can we teach him? How can I get it through to BF that his son is only going to stand out even MORE as he gets older if this isn't worked on?

Answer

One of the hallmarks of High-Functioning Autism (HFA) and Asperger's is the kid's tendency to be obsessed with a particular topic and to talk incessantly about it. The child may want to constantly talk about cartoon characters, insects, movies, race cars, video games, etc. It can be very frustrating for moms and dads to deal with a bright, articulate youngster who is somehow "stuck" in one particular frame of reference.

How can you break kids of these obsessive thoughts and ideas? The honest answer is: you may not be able to entirely eliminate them. Some kids will gradually leave one special interest behind, only to quickly fixate on a new one.

There are two ways to classify obsessions: "primary" and "secondary." Often it's difficult to tell which of the two you're dealing with.

Primary obsessions are bad enough that it is super difficult to get the HFA kid to think of anything else. The obsession monopolizes conversation and daily activities. It also interferes with schoolwork. The youngster is consumed by the obsession. Certain medications, like those prescribed for OCD, can be helpful. Check with your child's doctor.

Secondary obsessions are a challenge, but can be managed eventually. In addition, secondary interests can be used as motivators (i.e., they can help the youngster succeed in school or improve behavior).

Here are some ideas:

1. Give less of a response to random, meaningless comments about the obsession. If your HFA youngster mentions the topic-of-interest when it has nothing to do with what is currently going on, either do not respond at all, or act perplexed. Calmly say, "We're not playing that game right now," or "Why are you talking about that movie now?" If the youngster becomes angry, give a simple "um hum" with little eye contact, then ask a question that requires him to engage in the present activity or topic of conversation.

2. Reward the youngster for making conversation that is correctly related to what's going on at the moment. If you son looks at the sky and says, "I see some stars," that is a comment which is appropriate and in the moment. Immediately respond with acknowledgement and praise. "You're absolutely right! I see them too! Look, they are very far away. You've got really good eyesight."

3. Use the topic-of-interest to motivate good behavior. For example, buy a book, toy, or game associated with the obsession. Your child can play with it when homework is completed, or after sitting quietly.

4. Work with your kid's teachers to use the topic-of-interest to promote education. If, for example, your youngster likes snakes, apply them to math (e.g., "If there are 10 pythons in the backyard now, and 5 more show up later, how many snakes will there be all together?"). Use the topic-of-interest as a starting point, and then build on it, slowly expanding the youngster's areas of interest.





 

What other parents have had to say about this topic:

•    Anonymous said… A small amount of mood stabilizer helped my daughter. She would become very manic about subjects and than OCD. We had to listen or she would become very angry. Now she can hear our concerns for the subject going on too long as she at times follows us around like a puppy dog and input to her obsession.
•    Anonymous said… attend therapy with him. you will gain a better understanding; appreciate his mindset and learn how to handle meltdowns.
•    Anonymous said… best thing to do is keep your voice lowered they will lower theirs and stop sooner.
•    Anonymous said… Dont worry It will get better as he matures. You could try some magnetic balls, therabrushing or a exercise ball to channel the energies. I know this is hard but try not to react too much. I was in the same situation as you a few years ago.
•    Anonymous said… Get the books "Autism Discussion Page" from Amazon. Find out what you are dealing with and get help. This child can be helped. First, he needs unconditional love and acceptance. Get to know him on his terms. Then you have a God given instinct as to what help will work for him. As with most situations concerning ALL children......the parents must be trained first! Invest in this child!
•    Anonymous said… He's a 7 year old autistic child with a broken family (trauma). I'm sorry but the very last thing he needs is intolerance and adults looking for ways to make him more socially acceptable to them. If you are serious about marrying his father than start by talking to grown autistics in the neuro divergent movement how they feel about your perception of this child. Next step would be to get yourself into counseling and autistic awareness training. This child needs love and acceptance like he gets from his dad. He does not need another adult wedging between the only good relationship he has.
•    Anonymous said… Honestly, it is a hard journey. I suggest you educate yourself on by reading and researching. Each child is different. They change but you will if you want to continue because it is a lot of patience, monitoring, and understanding on a daily basis. My son was silent but super busy to the point that the teachers almost had a nervous breakdown, not one but three of them. Don't judge him yet. You will know what you can handle. Prayers!!!!
•    Anonymous said… I think that the over talking stems from anxiety that stems from a constant need to feel loved and accepted and then it feels like he needs to be the center of attention in order to attain that. At least that's what I gather from my interactions with my own stepson. My son has ADHD and he's just a motor-mouth, and we really just have to remind him to slow down and think. His poor brain just moves so fast.
•    Anonymous said… I think when you get to know him properly you will get to love this side of him always full of wonder about the topics they obese over . He is a child and with lots of love and attention it will die down a bit once he has made a home there and has other activities to keep him busy. Also a child Phycologist will help your child learn coping mechanisms for learning to take turns in talking etc.. PS I know plenty of people that like to talk one sided and are not on the spectrum.
•    Anonymous said… If you can't accept him the way he is, you might need to have a think about walking away. Sorry.
•    Anonymous said… If you want to form a good bond with him I suggest taking the time to talk to him about something he is passionate about. Our kids here 'shut up' from a lot of people in their lives. Try and find something that quiets his mind. For my teenage step daughter it is games on her phone and searching for and making new recipes.
•    Anonymous said… It is all about retraining the brain with positive, consistent reinforcement - I would suggest looking into a Social Skills therapy group with other peers his age....
•    Anonymous said… Look for the good in him and build on that! Love and a calm approach goes a long way. You will not change him, but by educating yourself and learning strategies you will learn to adjust and it will help your life run much smoother.... They are beautiful kids!
•    Anonymous said… Maybe I'm just way off, but as a prospective "step" parent, yours is a support role. If dad doesn't take the lead, your taking the lead will only cause your resentment to grow toward the child. It is possible NONE of this will ever change. Will you be okay with that?
•    Anonymous said… My Grandson was 7 when diagnosed he is now 22 and still talks excessively and still interrupts. We had a fantastic Pediatrician. He tolds to get Tony Attwood's book, it helped amazingly. It not something they grow out of it. My Grandson has no friends because he talks too much. I understand how you feel but it's worse for them. They found out my Grandson was visual, so I went on computer and got pictures for his morning routine before school put it on a chart on his door he learnt that straight away and then memorised it. I had pictures up everywhere. You need to do your research and things you can do to help support, once you've done that you need to look at the bigger picture can you do this. School is worse because these kids are targeted and bullied and it triggers off a reaction in them and there the one's who get suspended. I only ever had one school where the principal believed in the child bullying who got them to snap got into trouble the same as him reacting. :) Like I said this is how it goes. So routine is good for them.
•    Anonymous said… My son is 13. Omg! I took my three kids to a labyrinth (it's a prayer thing you walk through) I said the only rule is you can't talk. That kid couldn't even make it 30 secs!!! (The 5 and 8 year old did fine!). Dinner convos are all about him. Me and my husband can never talk when he's around. But on the other hand I know he won't hide anything from me. He's very very open about everything so, you could look at it with a different view. It's very exhausting but at the same time I know a lot of moms would love for their children to open up. (And if he isn't talking he is making a noise of some sort. Stomping though the house, bouncing a ball, knocking things over. It gets to be sensory overload for me sometimes)
•    Anonymous said… My son is 15 and has been on respiridone since he was about 7. He went off it for a period of time at age 11 and it was hell when he was off it and asked to be put back on it. I works great for him.
•    Anonymous said… Our Aspergers son is getting worse with his talking but it gets better when we take away electronics and he is participating in more real-life stuff. We have a house rule of no electronics during the school week. We also listen politely to what he wants to say, then I stop him and ask him a question about it and he asks me a question back. This is direct instruction of socks skills. There are other methods. Looks like there's a lot of good resources posted.
•    Anonymous said… Take the time to listen and engage, build a trusting relationship and then together you and your partner can come up with some gentle strategies for teaching your stepson about taking it in turns to talk. Perhaps have some family discussion time where you all sit at the table and talk, ask one another questions and whoever is holding a chosen object gets to talk (he will be busting to talk so to begin with, direct your question to him) then hand over the object so he can answer. No talking unless you are holding the Object, this ensures everyone is heard, just go easy on him to start with. Then he can ask a question and hand the object over to the next person. It will teach him about both giving and receiving and conversation in a gentle way. My son who is 14 gets very tense when he cannot say what he needs to, he explained to me that it causes physical discomfort, so keep this in mind and just go forth step at s time! Most importantly, this journey isn't the easiest, but if you do it with a heart filled with love, you will learn the patience (and you will need it!) good luck!
•    Anonymous said… The more anxious the more he will continue to talk non stop. He needs an enviorement where he finds love and acceptance.
•    Anonymous said… those of us who found ourselves with a child with added extras simply had to learn to deal with it, yes it's exhausting, but we deal with it out of love, just as we would if we had a disabled child. It's you who needs to learn coping mechanisms, because trying to force him to change will break him, and you'll end up with a depressed child. As time goes on and as you get closer to him, you'll find ways to tell him that you need some quiet time and he'll learn to accept that. But you have a choice, take on the hard work for the sake of love, or leave the situation
•    Anonymous said… U can't change who someone is to conform to your needs & wants. Yes it's extremely difficult at times having a child on the spectrum. My Son drives me bonkers on a daily basis with his talking that never stops, but that's who he is.
•    Anonymous said… Use Michelle Winners social thinking curriculum. Specifically Superflex takes on the Unthinkables. There is one Unthinkable called one-sided-Sid that captures this behavior.
•    Anonymous said… We have found a solution to this that works wonders for my kids. I have a 10, 7 yr (HF aspergers and poss adhd) and a 15mth toddler. We introduced this... When mummy or daddy are talking and you need to spk to us, don't say anything just place your hand on us and we will place our hand on top, then you know we know you want to spk to us. When mummy and daddy have finished talking we will say thank you for waiting... What can I help you with? We created it as a rule and explained it to the kids and I was so amazed when they started doing it. If they forget, I just say what's our rule? Hope it works for you too. If you have any more questions about it, feel free to message me. Good luck xx
•    Anonymous said… You better do some serious researching. The thing is, they are all different. No way to really know if that will stop but so much changes through puberty. Mine is 15 and doesn't say much at all anymore. He stays shutdown a lot of the time. I wish I could hear some of that enthusiastic chatter again. Working on getting him out of defense mode. It can be rough so if you think you can't handle it, get out before that child gets too invested in you.
•    Anonymous said… You need to decide if you can accept him the way he is or not. He won't change. There are small things u can learn to better handle it... But at the same time, maybe try to see the beauty in it. I bet he's like a walking encyclopaedia. U can learn from his knowledge. We have a hfa son and decided to adjust our lives to meet his needs. We function different than a typical family, my husband and I aren't able to have a quiet conversation at dinner, but we celebrate that we have a very very unique son.... It is what it is.

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