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It's Autism Spectrum Disorder! How do you share the news?

"My son was diagnosed with level 1 (high functioning) autism last week. I must say I am feeling a mixed bag of emotions here. How do I tell other family members and friends that my son has this - or is it better to not say anything?"

First of all, there's nothing to be ashamed of here. ASD Level 1, or High-Functioning Autism (HFA), is not a disease or the result of bad parenting, rather it is a neurological disorder. You can't catch a disorder, but you can catch a disease. A disorder is inherited, whereas a disease can be caught by anyone who is not immune to it. More specifically, a disorder is an "abnormality of function." A disease is a definite "pathological process."

HFA is certainly nothing to be afraid of.  Would you feel as alarmed if your son had been diagnosed with Dyslexia (another neurological disorder)? Probably not. When parents hear the word "autism," a lot of frightening images (misconceptions) may pop-up in their head based on the limited knowledge they have at the time.

Finding out that one’s child has been diagnosed with HFA or Asperger's can be distressing for some parents. Moms and dads may naturally feel guilty even though there isn’t anything yet known that could have prevented the disorder. Through all of this comes the need for telling others about the syndrome and how it affects the child.

If you are faced with having to tell those around you that your child has an autism spectrum disorder, the first thing you want to do is understand and read about the condition so that you can answer questions appropriately and truly be an advocate for your child. You will want to start with those closest to you, beginning with the siblings.




Telling your other children that their sibling has a "brain issue" that causes him to have problems talking with others, causes him to focus inordinately on certain subjects to the exclusion of others, and results in him performing ritual behaviors may be enough. The siblings have seen everything already and just need to know that there is a reason behind the behaviors. It can help siblings be less frustrated with their "special needs" brother or sister - and can also help them to become advocates for him or her. Having a name for what the siblings are seeing can help a great deal.

After the family becomes accustomed to the diagnosis, it’s time to speak with the extended family. Encourage them to read what they can on the disorder, and help them connect the symptoms they see with a brain disorder that can’t be helped. If they know that much of the behavior is beyond the control of your son, family members can come to love him at the level they’re at.

Certainly, teachers need to understand the diagnosis and how it is affecting your son. Plans need to be made to alter the educational style the teacher uses to help teach him in an effective manner. A frank discussion of the diagnosis should be followed with problem-solving methods that will help your son thrive as best he can in the educational world.

Beyond family, educators, and perhaps daycare workers, you don’t necessarily need to tell the rest of the world, especially if others don’t see much of a problem in your son's behavior. What you do eventually say can be as simple as “my son has a brain disorder” or as complex as explaining the disorder to its fullest to interested friends or acquaintances. Certainly, the conversation needs to take place every year as new teachers come into the picture. The good news is that, in today’s times, HFA is more well known and more easily understandable than it once was.

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==> Videos for Parents of Children and Teens with ASD

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PARENTS' COMMENTS:

•    Anonymous said... Definitely tell them. They will need your help to understand what is best for your son and you will need their support. Everyone in your son's life needs to be on board!
•    Anonymous said... Don't be afraid to tell. I was rejected and criticized by friends and family. But, it's my childs life that I need to worry about helping, not how people take my news. Best of luck. Be strong.
•    Anonymous said... Good luck ! In our case we have been treated poorly , talked about and misunderstood so often.
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•    Anonymous said... I found that telling them was the best thing to do. At first they were hesitant, but they took time to research and learn about it and the difference in how they related to my son was HUGE. I no longer was looked at as the pushover when I dealt with him differently and their way of dealing with him changed as well. There are some great books out there for kids and adults that can help as well. I love All Cats Have Aspergers and her new book Inside Aspergers Looking Out is a great way of showing "typical people" how life looks to an Aspie. Robison's book Look Me in The Eye is also great for adults. Good luck on you journey!
•    Anonymous said... I have 2 amazing children with AS. This is something you should not have to hide being there is nothing wrong with your child. The main reason you need to tell family members, teachers, sitters, pediatrician/family doctor is so they can do extensive research. My children with AS react differently to certain situations then my other 2 children. They need to know what makes your Aspie child uncomfortable to avoid causing him or her to have a mental or emotional breakdown. The school needs to know especially if your child struggles in any subject. One of my children with AS has an IEP and sees an OT at school. If you need any help or advice feel free to message me. This can all be overwhelming at first but you will soon realize it gets easier.
•    Anonymous said... I have always been very open and upfront about my sons diagnosis and very open with sharing his uniqueness. People are always going to form their own opinions and I am sure pass judgement no matter what you tell them, that's just human nature. I hope you can feel better about your sons diagnosis, just embrace it and try go with the flow
•    Anonymous said... I have found with ourselves and a lot of my friends it is the husbands side that have the difficulty understanding the diagnosis.
•    Anonymous said... I think of it as a T account. School must know the official evaluation as does associations like cub scouts for health record reasons. Friends, family acquaintances as the situation arises. It does not get announced like introducing someone for the first time, but as interacting appears to have a struggle on one side as information as needed. This way each has a chance to not prejudge but then see for themselves where some things are easier then others, some struggles and that it is not defiance. He is an amazing speller, reader, ... The hardest thing is recognizing not understanding a situation, being overstimulated/overwhelmed, and not that a purposeful defiance is being done. He likes peanut butter and jelly for lunches because he knows what to expect, not that he is a picky eater. At that point it makes it easier for each side to want to avoid pushing the buttons that make uncomfortableness not find an excuse or blame. Then each finds each others amazing talents.
•    Anonymous said... mine were all dx as adults,including hubby,most told me THEY CANT BE,or they said,BUT THEY HAVE JOBS,so i had thier official dx photo copied and sent all a copy,they rarely mention it,it makes me so cross,
•    Anonymous said... My in laws had a hard time adjusting with my son. He didn't have the best table manners, he's messy and didn't make eye contact. To them at first it was just poor parenting or bad mannered. But once they knew what it was they began to do there own research and talk to others and see him in a different light. I don't ever let him use it as an excuse. But since he can't hide his behaviors we can't hide the diagnosis.
•    Anonymous said... My in laws have pushed my kids aside, ridiculed them called them alsorts of names and I wish I had never told them. My family have accepted that they are different and have little routines and ways of doing things and as my parents past away when I was a very young age, my Aunty who is my mothers sister has step in as a grandmother to my kids and she is proud of their achievements and comes to grandparents thing, where my mother in law won't have anything to do with grandparent activities at school. What see doesn't realize is dealing with 2 little bright boys, they have worked out Nana doesn't come to things and so now they no longer ask. My youngest asked her to something last year and in front of her my eldest said why ask Nana, you should ask Gran as Nana won't come and she just laughed, then later ripped into me over my eldest comments. Some people honestly don't understand these kids and other just don't want to understand.
•    Anonymous said... My son is 5 years old and he knows he has Aspergers we tell him it is his superpower and he can do anything he puts hard work into. My in laws are cluless, my parents try to understand. But basically it comes down to yourself and the people who live in the house that matter because those are the only people that live your life with you. I know its hard, i cry when we have hard days and feel stressed and out of my mind on other days, but then i get that little time that comes once in a while where he shows some happiness maybe relaxation and we are able to laugh and have fun for the moment. Enjoy what he enjoys bring his world into yours for both you.
•    Anonymous said... My son is high functioning and I have always known there was just this little something different but didn't know exactly what. My family gets frustrated with him and then frustrated with me for letting him act that way (before the dx). As soon as I got the dx and literature, I handed it out. I said this is my son, either accept him as he is or stay out of his life bc condemning him and me for his behavior is not acceptable. Harsh maybe but effective. It seems harder for people to accept the dx because he looks and acts just like every other child except in those moments when AS is very clear. My son understands it now, his teachers know, I told the Scout leaders and anyone else that needs to know. He's crazy smart, wonderful heart and a good all around kid. No shame here.....I just want people to understand his quirky social behavior is just that.....quirky and accept it. Good luck!
•    Anonymous said... Yes - tell. It shouldn't be a secret or something to be ashamed of. I started by having relatives read "can I tell you about aspergers?"
•    Anonymous said... You also need to be prepared to cut people off that refuse to accept the diagnosis.
•    Anonymous said... You should tell them but make it is know that you have them treat him no different than any other kid bu also explain to them what HA is.

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When Your Child Is Jekyll At School, But Hyde At Home

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Teaching Active Listening Skills to Kids on the Autism Spectrum

"My child (high functioning autistic) rarely makes eye contact with people other than immediate family. Our neighbors have even made the comment that my son appears to ignore them when they have attempted a conversation, and now they have pretty much stopped trying to engage him. Should I insist that he look people in the eye when they are talking to him, or just let it go?"

While it's not a good idea to force a youngster with ASD or High-Functioning Autism (HFA) to "look people in the eye" during conversations, there is certainly something to be said for teaching him a few social skills so that he's not perceived as being rude. Giving the speaker some indication that you are listening is simply the polite thing to do, and your son needs to understand this.

Kids with HFA generally don’t have the innate ability to exchange eye contact or use appropriate facial expressions when interacting with others. This can make them seem odd when interacting with both grown-ups and their peers. 

Some of the way they interact with others can cause teasing or other behaviors that cause the "special needs" child to feel lonely or left out of the conversations of others. Kids on the autism spectrum often can tell that something is wrong with their interactions with others, and their self-esteem can suffer as a result.

Fortunately, they are usually very intelligent and can be taught things that otherwise wouldn’t come naturally. In other words, social skills training directed at specifically teaching the youngster to use proper eye contact and facial expressions is possible, and often works very well in helping improve his or her self-esteem.

This kind of training is generally very concrete and explicit. Some general psychotherapists can do this, but those who deal with autism spectrum disorders or occupational therapists as part of school or a clinic can teach the HFA or AS child the techniques needed for greater social acceptance and a secondary greater self esteem. And of course, moms and dads are in a great position to teach these social skills as well.

Because these things don’t come naturally to children on the spectrum, they learn things like when to smile, laugh, or use facial expression in the same way they learn facts and figures in school. They learn through instruction and role play, and the skills may need to be reinforced as the youngster ages. 

These skills go a long way toward the advancement of these young people in their lives and in society. It can make the difference between being a "disabled" person (unfair label that HFA kids often receives) versus "a youngster with a few quirks."



==> Videos for Parents of Children and Teens with ASD


COMMENTS:

•    Anonymous said... You need to teach him. This is one of many skills he will need to learn to function/succeed in society. A couple of tips from my experience: first explain that looking at a person's face is a SIGNAL to the other person that you're listening and that you NEED to do it every time. For years I was accusing my son of not listening when he wasn't looking, but he WAS listening, just not signaling it. When I explain these as social rules that he has to follow he seems to have an easier time adopting them. Second, talk to your neighbors and educate them about Aspergers. They don't need to feel ignored just because your child doesn't know the right signals to send. Every positive social interaction helps. Third, have your child learn to pick a spot on a person's face - forehead, chin, anywhere near their eyes, to look at during conversations. It can be hard for someone with Aspergers to articulate why looking in other peoples eyes is so uncomfortable, but it is and won't stop being that way. Teach them how to compromise. Look at their eyes briefly, then find other places on the face to signal that you're listening. My current problem is teaching my son to look at other people during sports, like throwing a baseball to someone, but it will come. Your child is very intelligent, you just need to find a way to explain social rules most of the world take for granted in a way that he can understand and keep reminding him until they become a habit for him.

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•    Anonymous said... You need to exp to them why your son is like he is they are grown up so they should understand
•    Anonymous said... with my aspergers hubby if i tell him he should look at people he tends to stare, that can cause trouble too,
•    Anonymous said... TIP: It can appear that you are looking someone in the eye if you look at the bridge of someone's nose or their forehead. My son who is 13 feels uncomfortable with looking someone in the eye and have given him this tip. He says it helps.
•    Anonymous said... There are support groups in FB for adults with autism. I like to go on there an ask this question of folks who can actually tell me what their experience is because they can verbalized it better than my son who is only 10. They are always helpful to me and it helps me understand him and what he's going through better! I don't insist because my son also has anxiety and when he makes eye contact the faces blur (according to him and several adult aspies I asked). Tell your neighbors to work in being more understanding!
•    Anonymous said... take to mind every child is like a finger print and trust your gut feelings, because you know your child and how far you can correct behaviors do to the Autism.
•    Anonymous said... my son listens better when not looking at us. We don't force it and he looks at when he wants to.
•    Anonymous said... My son has Aspergers and we have taught him to look at either someones nose or forehead when they are speaking to them. Keeping him from wandering around while he's speaking is something we are still working on.
•    Anonymous said... my aspie child is selective. i can now see instantly who he will have a good relationship with in seconds. i think he knows that too. we gently remind him to look at people. sometimes he doesn't look at us, his parents... especially if we are reprimanding him about something. don't force it, gently remind, gently discuss, they will learn to cope as they enter into adulthood.
•    Anonymous said... I know NT kids who pretty much ignore anyone not already in their social circle. But I admit the "listening but not looking" thing is hard to remember, even for me. I do press eye contact in important situations but stress that it's for my comfort that he's paying attention and let him know that's what people expect.
•    Anonymous said... I have to say my son use to have the same issue and it was before we knew he had Autism but he had a hearing impairment that would be later corrected with tubes. We held his face to communicate with him forcing eye contact. He was diagnosed several years later with Autism. I can say now that he is an adult he was not forever damaged by us forcing eye contact, as he now thanks me for the boundaries that I put in place for him.
•    Anonymous said... I had trouble with eye contact as a child (looking in peoples' eyes felt like being burned is the only way to describe the sensation I had when I made eye contact). A family friend suggested I look "around" peoples' eyes--eyebrow, nose, checkbone, mouth- instead of zeroing in on their pupils. This worked for me and I gradually was able to make more eye contact and feel less discomfort. I also discovered it was much easier to make eye contact while wearing glasses or sunglasses. The lenses provided just enough of a barrier to make eye contact more comfortable. I taught the same techniques to my son who has the same difficulty with eye contact. I hope this helps.
•    Anonymous said... don't insist. My son is 16 and a very successful HS sophomore. He still doesn't look at us when talking, or listening. We wrote in all his IEPs that teachers should realize that he's listening the most when he's not looking. And we explain to friends that he is listening. Folks that know him well get used to it. We are trying to teach him to be a self-advocate, and explain himself why he doesn't look. Not there yet. :0)
•    Anonymous said... Don't force it! Teach him to explain to people that he's uncomfortable with eye contact. Works for my almost 9-year-old son.
•    Anonymous said... Definitely not. I have a boy with Autism and there's lots of groups on here and I read one day that when an Autistic child is looking at something their brain is taking pictures quite rapidly, like a camera and they have to look away because their brain overloads. My boy wouldn't look anyone in the eye for more than a second when he was little, but now he's 7 years old and gives really good eye contact. Don't force it, it will come in time xx

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Dealing with Obsessions and Compulsive Behaviors in Children on the Autism Spectrum

"My 5-year-old is obsessed with Legos. In fact, his entire bedroom looks like a Lego museum. People who go into his room are rather impressed with the massive structures he has created. But my question is, should I allow him to continue to collect these pieces? It is starting to become a bit overwhelming."

Children with ASD or High-Functioning Autism (HFA) often must deal with obsessions and compulsive behavior. They may become fixated on a narrow subject, such as the weather, compulsive neatness, baseball statistics or other narrow interest. In fact, this is often a hallmark sign of the disorder.

While most of the core issues with HFA can’t be "cured," there are ways a family can cope with such issues and learn to overcome some of them. For example, kids on the autism spectrum can be explicitly taught better ways of communication with others, which will lessen their focus on the obsession or other solitary activities. 

Certain types of cognitive behavioral therapy can help as well. Finally, in severe cases, medications that control obsessive behavior can be tried to see if some of the obsessiveness reduces.





Families must, to some extent, learn to cope with compulsive behaviors on the part of their "special needs" child. It helps to learn as much as you can about the disorder and its nuances. Learn as much about your child as you can, and learn which things trigger inappropriate compulsive behavior so they can be avoided. 

Some compulsive behavior is completely benign and is easily tolerated by everyone involved. As a parent, you need to decide which kinds of behaviors should be just tolerated, and which need intervention.

==> Parenting Children and Teens with High-Functioning Autism

Allow others (e.g., therapists, teachers, doctors) to help your child with some of his behaviors. As a parent, you can be expected to do only so much, and others may have to be involved in helping you help your child.

In some cases, it helps to turn your child’s obsession into a passion that can be integrated into his own extracurricular or school activities. A consuming interest in a given subject can help connect your child to schoolwork or social activities, depending on the obsession and the behavior. Only you, and perhaps your child’s doctors and teachers, can decide whether or not it’s appropriate to allow the child to fixate on a particular subject excessively.




==> Videos for Parents of Children and Teens with ASD


COMMENTS:

•    Anonymous said... Absolutely yes. its great for hand and eye coordination. my son is slmost 21 and i still give him one every Christmas.
•    Anonymous said... And what a wonderful obsession it is!!! We have so many Legos/Bionicles if I ever sold them I think I would be rich!!! My boys are hitting the teen years and still get them out. My youngest daughter plays as well. I found these great storage bags called Swoop that spread out on the floor like a mat and then when your done you can tie it up and put them away!! Although not for masterpieces in progress!!
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•    Anonymous said... Aspie's like to collect things. Let him display them. It's a great sense of accomplishment for him. I bet he gets excited when people compliment him on them! My 11 yr old Aspie still builds with them. He has a huge container full of pieces, but has built so many intricate ones that they are displayed on shelves in his room. Some have spilled over into my living room, so I just found more space in his room for them. I wish he was able to have a playroom where he could keep them. My son's main restricted interest is video games, so I love when he puts down the controller in favor of legos. Debi Conn is right.... eventually another restricted interest will take its place.
•    Anonymous said... Heh. My 7yo Aspie son's room in the same. He likes to pull them apart after a while and then rebuild new structures not ever thought of when the kits were put together. If it's not detrimental to his everyday functioning, where's the problem? Lego is EXCELLENT for developing fine motor control and learning important concepts: engineering/design principals, physics, creativity, planning. It's also something that they have total control over, which is important for all kids but especially kids on the spectrum.
•    Anonymous said... I don't know what the experts say, but we allow our daughter to have her "obsessions." For 2 years it was 100% Wonder Pets. Then for a year it was stickers. Now for the past year it's been Beanie Boos - her room is devoted. I don't see harm in it, as it brings her comfort when otherwise her sensory issues cause her grief.
•    Anonymous said... I say YES! My 13 year old w/ Aspergers LOVES his! It's one of the few things he enjoys and he takes great pride in! He's been building since around 7 he loves kinects and bionicles he buys a new one with his own $ every chance he gets... I would encourage him to continue.. Be excited when he builds something new.... We take pictures for a "portfolio" so he can take down certain pieces to build a newer or better version... It's a great outlet for them... Be proud momma
•    Anonymous said... I would say yes as well. My 5 year old is obsessed with zoo's and animals. I love it when he takes me on a zoo tour after he has spent an hour setting up his room. He also likes video games, and they could become an obsession if I don't drastically reduce the amount of time he is allowed on it and make video games a reward. So, it is good your son is using his imagination and skills with Legos verses spending hours on video games. I think we need to love and embrace the beautiful aspects of AS is our children.
•    Anonymous said... I would say, yes keep letting him collect. We started my son at age 4 and he has a 10 gal green rubber made tub full to the top. He still is building. I feel to fuels their creativity.
•    Anonymous said... IF that's what works...go with it. ~an aspie mommy
•    Anonymous said... If you have limited funds, you can create a photo collection of your child's masterpieces. It's a way to preserve them so your child will be willing to re-use the lego pieces.
•    Anonymous said... Just a thought... I let my son continue with whatever he is "in to" at the time but try to introduce related tangents that he might like. I do this to broaden his world in a comfortable way for him. If your child loves legos and building things with them you could try to introduce the process of sketching out his building plans. That could lead into other types of drawing or art projects. The key is to help them grow and broaden their interests without taking away what they enjoy. Does that make sense? It has worked really well for us.
•    Anonymous said... Legos never lose value so if he ever did move on you could sell them but Lego has a large adult following and people collect them my son has massive amounts as well we have 3 walls of bins sorted by color & body bins he enjoys sorting as much as building. My only rule is they have to stay out of the common areas of the house his room and basement I don't care about.
•    Anonymous said... let him be and God willing it's your biggest worry in his life
•    Anonymous said... Most definitely YES! This is one of the best activities to use when they are trying to play with other kids. Every kid likes Legos! It helps to bridge that "what do you want to do" gap!
•    Anonymous said... My 13 yr old has a room totally filled with Lego. His clothes and cupboard draws are stacked with amazing structures. He play occasionally now when stressed or really bored. But he still won't let go it. He puts his clothes in the bedside table draw. And wk t get new clothes as the Lego is more important.
•    Anonymous said... My 9 year old also has a Lego thing. And once he puts them together they stay together. His room is VERY overwhelming to me, but I believe he is seeking visual input. It is a great side of creativity as well. I say let him keep them.
•    Anonymous said... my son's current obession is legos and also trains. he goes back and forth between them, what we do is we let him play with them and then make him back off for a day or 2 to givem them a break, if not then he gets overwhelmed and frustrated because he cant think of what to build with them
•    Anonymous said... Our 11 yr old daughters obsession is Harry potter- we allow it all but work with her on socially acceptable levels around peers or family, for example- you can't wear the griffendor robe to school or not monopolizing the conversation about Harry. It's tough to teach balance but every kid has interests- it would be unfair to deny an interest to any child- just teach that there are social rules around it.
•    Anonymous said... Our son is 8yo and is an Aspie. He loves building with his lego but then shows little imagination as far as playing. So mostly his creations stay on his lego table once completed. This is one area we need to work on with him - imagination and play. ANY SUGGESTIONS WOULD BE HELPFUL. We try to use Lego to teach him things like following instructions, colors, and maths. I will refer to pieces as "two by four block " or "four by eight flat" and he must count the "dots" on the pieces, and tell us what the answer is. He has completed several larger lego with no assistance at all. We then Facebook a picture, which he also loves as our family and friends can be part of encouraging and rewarding him. He also loves the "Cars" movies, so we have found him Cars lego which has been great. I think lego is great for kids on the spectrum.
•    Anonymous said... Same with my soon to be teen.....most of his lego is stored in basement as he outgrew it.....still builds a bit but gradually new interests took over....right now it is midievil history....lol
•    Anonymous said... Sounds just like my Dylan. His room is filled with lego. At times you cannot even see the floor. We too have put bins in his room to help keep things organized. When it gets too much I make him clean up. However the next day they are all over the place again. It is an ongoing struggle! Lego is his comfort so to remove it from his room would not be a good idea. So we just keep encouraging the constant clean up.
•    Anonymous said... Yes as we have found with my youngest his obsession Thomas and Lego Ninjargo. These have encouraged creativity and imagination not only with play, but with his story writing at school. They also have Thomas rewards stickers at school which are used for really good work and to encourage new tasks, he will try anything for a Thomas sticker.
•    Anonymous said... YES keep them. We go to lots of lego conventions and there are many adult Lego clubs. might be a good social thing for him as he gets older. Also, I have a 5-yr-old NT boy, and he has all his own lego obsession, paired with all his 16-yr-old aspie brother's legos. It IS overwhelming. LOL Just try not to step on them.
•    Anonymous said... Yes! My husband has a cousin who's been collecting Star Wars Lego sets for years... He doesn't have aspergers and he's in his late 30's and he still gets them for holidays! It's a hobby like any other thing! Aspies get labeled with the word obsession but I think it's a passion and we all have them! And indulging them is to encourage them! Maybe he'll become an engineer for Lego someday! That's a career creating Legos and its a real job listed on their website believe it or not! And the only thing he will remember when he older and happy with his work is that his wonderful parents encouraged his dreams!
•    Anonymous said... Yes, we put a line of shelves all the way around my sons room, along with other bookcases. Soon he will move onto another obsession all on his own.
•    Anonymous said... Yes. People with aspergers have a better ability to visualise things in three dimensions, they may well struggle to draw in 2D, but will excel at 3D. Really there are strengths and weaknesses to this, work on the strengths, and learn to identify and counter the weaknesses.

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Tailored Teaching Methods for Students with Autism Spectrum Disorder (ASD)

When educating students with Autism Spectrum Disorder (ASD), it is crucial to adopt teaching strategies that address their individual needs ...