"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.
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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==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder
==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder
==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance
==> Teaching Social-Skills and Emotion-Management to Children with Autism Spectrum Disorder
==> Parenting Children and Teens with High-Functioning Autism: Parents' Comprehensive Handbook
==> Unraveling the Mystery Behind High-Functioning Autism: Audio Book
==> Crucial Research-Based Parenting Strategies for Children and Teens with High-Functioning Autism
==> Videos for Parents of Children and Teens with ASD
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Resources for parents of children and teens on the autism spectrum:
==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder
==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance
==> Teaching Social-Skills and Emotion-Management to Children with Autism Spectrum Disorder
==> Parenting Children and Teens with High-Functioning Autism: Parents' Comprehensive Handbook
==> Unraveling the Mystery Behind High-Functioning Autism: Audio Book
==> Crucial Research-Based Parenting Strategies for Children and Teens with High-Functioning Autism
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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.
• 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.
Post your comment below…
• 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.
Post your comment below…