Should Parents Reveal Their Child's Autism Diagnosis? This Study Suggests It's a Good Idea
A common experience reported by parents of children with autism is the perception of being ‘judged’ by other adults about their parenting skills or the appropriateness of behaviors displayed by their children. In order to understand this phenomenon, at team of French researchers conducted a very clever study using a methodology popular in social psychology research.While few readers of this blog are French, I'm guessing that many have experienced that sense of being judged by others. Among those most likely to be judged harshly are parents of children who appear perfectly typical -- often those at the higher end of the spectrum. All too often, such children are judged to be spoiled or bratty when they are, in fact, suffering from sensory overloads or other explainable issues.The team showed clips of a video of a six year old boy with high functioning autism to 88 French adults. The clips showed the boy engaging in 4 different behaviors, namely: leaning back on a chair and moaning, having a temper tantrum without clear reasons, using a computer, and sitting at a table talking in front of a camera. One half of the adult participants were told that the child had Autism while the other half was not informed of the diagnosis. After showing the clips of each behavior, the adult participants were instructed to rate the child on 10 continuous dimensions (unruly, nice, alert, anxiety-ridden, etc).
The authors found that when participants knew the clinical diagnosis of the child, they were more tolerant of the “negative” behaviors shown in the clips. Likewise, these informed adults were also more likely to rate the child positively in cognitive dimensions (intelligent, quick-minded, alert).
Our son can often appear normal in public -- that is, until he's required to interact verbally. Then, his odd speech patterns and extreme shyness make his differences obvious. We find it easiest to let potential teachers, coaches and camp counselors know about Tom's diagnosis up front; overall, we've found most people are understanding and accepting if they're aware of his differences. We also find that telling people of Tom's diagnosis allows us to coach others on how best to interact with him, and how to help him connect with others.
What's your experience with revealing a child's autism diagnosis? Has it helped or hurt in general?
Comments
My experience is there still isn’t enough awareness for people to know the meaning of autism when you express this in public. Since autism has no physical look about it, kids with autism do appear as typical as any other, other than the obvious behaviors. Going to stores, parties, it really didn’t matter if the people knew or not. The experience either way was never all that great and the publics opinion of behavior wasn’t changing.
For specific services and 1:1 or smaller groups, yes, expressing the diagnosis has made it better. Their interaction with my child was better because of that.
If we are out in a situation that might affect our son negatively we head off problems. I put him in his t-shirt that says “I have a silly laugh, 4 tickles spots and autism”. The humor seems to hit just the right note with the people around us and most are pretty tolerant. I have also seen one that says “I have autism, what’s your excuse?”
i found that telling people in general about my son’s HF autism leads them to look at him differently-almost as if they are afraid of him or ‘it’(autism).
I immediately sense their discomfort when it comes to their ‘typical child’ being near /playing with him.
It automatically puts a label on him that people do not understand.
However, I feel I must tell & explain certain issues that he faces and what to expect from him to superiors such as teachers. etc.
Either way, it’s hard not being able to explain to people what my son is all about, and how he is more the same than different than their own child(ren).
I have 2 boys on the spectrum. I do not discuss the diagnosis with people in general. My older son, diagnosed with Asperger’s at age 11, is quite sensitive about people knowing his “label”. The teachers that work directly with him at school have the information due to the fact that he has an IEP in place, family members know, put none of his peer group is aware. At 15 he seems to be holding his own for the most part socially although the “friends” that he hangs out with tend to change fairly frequently. He does have a small group of peers that seem very tolerant of his quirks.
My younger son is 6 and has other SN as well as the Autism diagnosis. His interaction with peer groups is very limited and very controlled by adults. I think most people are aware of his diagnosis because his other needs are visible and people just ask.
I don’t think it hurts to inform people that are closely involved with your child about a diagnosis and for the most part it helps people have at least an understanding to not take the behaviors personally and lighten up on situations that are trying from a behavioral stand point. That said…it doesn’t always help as I have personally experienced.
I have a son with Aspergers that has a double masters ( at 23, has just taken his State Department exam and this is how I did it:
Moved from the suburbs to the country both school districts were hopeless anyway.
The world would not change for my son so I had to teach him to adapt.
I taught him that it is OK to be different but when in public there were certain rules of behavior that we all had to play by. In our family we call this the Norman Rockwell rule.
This battle raged through high school. We took a deep breath, crossed our fingers and sent him 1,000 miles away to a wonderful small college where he met other very bright kids and made his first real long term friends.
He is still bright and “different” but he also knows the rules that we all have to play by to keep the social order.
I know that this sounds overly simplified and in a perfect world we would make exceptions for every handicap but the reality is that you will not always be there to take care of this child and the best thing you can do is teach him to live in the real world and not the world we wish it was.
We 5 children in our family with Autism, we have 2 sons are selves believe in always talking about autism to help awarness. Our sister inlaw and many friends that have children with autism, believe its nobodys buisness. Awarness is the key, for finding a cure and for acceptance. Our foundation is called On the Road with Autism.com, see our video www.youtube/ontheroadwithautism
love to ya all kimberly
I have three year old daughter who is diagnosed autism.I experienced a very harshed judgement from an employee at Pittsburgh Zoo. My daughter is those high function kid. Shen acts normal most of the time. One of her problems is that she has to follow her routine. If her routine is changed, she will have a tamper tantrum. We went to the Zoo on the Hawlloween Day. It was very crowded. We went through the line, but she insisted to sit at her regular seat instead of the one the Zoo employee wanted her to do. The Zoon emplyee YELL at me in front of the whole group that I should learn to disipline my child.That was a very humiliated expereince. Now I feel hested to take my daughter to the public place. I wish that we need to educate the public, especially the place that children often visit.
When my son was diagnosed it was very difficult in the beginning to decide who do I tell or not tell? And more imporant was I would make a choice that would affect him the most. I came to the reality that in order for people to understand the complexity of autism that we had to tell people. My son is very high functioning, I could probably have not shared this too the degree I have but why would I try to hide something that is so much apart of my son and our life? I believe firmly that if people judge or treat my son differently because they know this about him he is better off knowing where he stands sooner rather than later and also he has nothing to be ashamed of or to hide. We can only educate and gain acceptance if we share every part of the spectrum with others.
When beau was a child we decided to tell each care giver that Beau was diagnosed as being ADHD. His diagnosis later was Autism but at the time we didn’t have the correct diagnosis. Some day cares would not even accept him. They said they were not equipped to help with special needs children. Beau is now 27 years old and still has some outburts but he has learned to go to a private place (usually the restroom) and flay his hands or shake it off until he gets in control of himself. We carry cards that we purchased from Autism Society of America with us that explains his behavior and the behaviors of others wiith Autism. They explain that Autism is a disorder of brain function affecting 1 in 250 people. I know the numbers are higher now like 1 in 150 people but the cards do help and people are more receptive to the unusual behaviors of my son than they were before we purchased the cards and started giving them out. Beau has a high school education and is now taking courses from Seminary. He owns his own car and drives himself wherever he needs to go. Prayer to God the Father and Jesus His Son has been what has brought us to the point we are at right now.———-Love in Christ from our family to yours and much prayer for each of you Shirley Buttram
Where can I purchase such cards? I have an 11 year with HF autism.
In my experience, it definately helps to make others aware that my son is High Functioning autistic.
I agree that it is nobody’s business. We are not required to give explanations to complete strangers in public places. I find that most people figure it out pretty quickly anyway.
Some observations, based on our experiences during the past 22 years:
1) The people who are most likely to make critical comments are older women. Least likely to make comments: men, of any age.
2) Those older women will make the negative and critical comments to the child’s mother, but almost never to his father. They don’t know how Dad will react: he might tell them to go to Hell.
Our son has a habit of flinging the car door open and twice in a period of 10 seconds hit a car with the driver sitting in it. I was so unnerved I didn’t know what to say, but when I told him my son had HF autism, his demeanor changed and he told me he understood since he had a niece with autism.
People are much more understanding, and informed, than we give them credit for.
I have found, that like the parents of others at the higher end of the spectrum, revealing that my daughter is autistic can open up a wealth of understanding and/or dialogue on how best to interpret what is going on with her behaviors. Those who have worked with her outside of school have gained an understanding of how to deal with her behaviors, what to tolerate as being “autism” and what not to. In addition, as an educator myself, revealing that my daughter is autistic starts a dialogue with my colleagues about what that entails, especially when they get a chance to actually meet her. She is definitely NOT shy about revealing her autism, and will often tell people when introduced. She is actually developed a self-confidence about the situation when she is able to express what that means.
I don’t believe that autism is an excuse, but it is an explanation for the “quirkiness” that my daughter exhibits. By not being hesitant to reveal this information, it enables her to learn how to cope with her difference and not be intolerant of others. It has also helped to build her own self-image in a positive way, so that she doesn’t see her autism as a negative or disability, but rather as a difference that enables her to have her own unique view of life and the challenges it presents.
When our son was first diagnosed we went out of our way to inform everyone that our son was autistic and sometimes his behavior was not “typical” and he would act up over minor issues, and that he was very sensitive to light, touch and sound which could also cause him to act out.
We stopped, when we realized his behavior was no different then most “normal” child
his age and by tell everyone that he was autistic only made people viewed him differently and treated him with pity.
The last thing he needed or wanted was their pity. When may son was six, a woman came up to him and wanted to pray over him so that the “Good Lord” would forgive him and his family their sins so he could be normal again. My son turned to her and said “I am not the one who needs God’s forgiveness, you do for your intolerance of God love”.
I have a high school junior daughter who is
accepted by other high school kids as an aquaintance,but not as a friend. She did try sharing the information on her disability with other girls her age and found them more accepting once they knew the reason she seems different. But so far they are willing to agree to get together with her once in awhile yet these girls have not seemed to be open to nurturing a real friendship where they do more of the work. They don’t call and invite. They agree once in awhile to her invite.She met them thru her theatre production class at school where they perform plays each semester.She actually has an easier time befriending boys due to their reduced expectation need for intense emotional friendship support and lessened dependence upon the emotional reciprocity girls thrive on. I would like to know what others with girls are doing regarding this and have their daughters been successful. I think part of our problem is we are at the lower average intelligence versus higher so she can’t make up for the social skill deficit with intellectual brightness.It is hard to watch and not be able to adequately help and make a difference. I would like to hear from others on this.
There are many situations in which I explain that my grandaughter has autism. For a little example, today while in an inpatient waiting room a very friendly woman was talking to me and my grandaughter just smiled a lot at her and made her little happy noises (she is a small 12, non-verbal and low functioning in many areas) the woman had just recently had brain surgery and thought that my granddaugter found her very obvious scar to be funny. She seemed very self conscious so I explained that my grandaughter has auatism and that she relates more to a personality and not to physical aspects of a person. Other than being anxious at times, my grandaughter has no outward signs of having anything different than any one else other than being non-verbal. I always have a better response from people when they understand that she has autism, even when they don’t understand it. Does anyone really understand autism. The kids, etc. are all so different from one another. I take her anywhere and everywhere.
I have always let it be known that my son has HF Autism. It is my belief that hiding it or keeping it a secret keeps a stigma attached to it and there shouldn’t be one. My son is 11, has brown hair, autism and blue eyes. It’s just a part of who he is and he is very proud of being autistic - he thinks it makes him special.
To me autism is not something to be hidden away - it is just a different type of gift. Sometimes it makes things difficult to cope with but I wouldn’t have my son any other way.
My son has Autism and I never hide the fact from anyone. We have even told him that he has Autism as well he dosent understand persa but he knows that he is different and it is Ok to be different.
I have a three-year old son who was diagnosed with autism this past summer. Once I received this diagnose, I told everyone (family and friends) about his autism. I’ve never had a bad experience but, a great experience because, once people found out about his diagnose; it didn’t change how they felt or interact with him but, it caused a hunger in each of them to want to learn about autism and treatments. As far as, strangers I don’t feel shame to let anyone know about my son’s autism becuase, I have embrace it and we are now on the road to recovery. But, I feel it is my duty as well as other parents with children with autism to educate the public about it in a positive way because, what people don’t know about nor understand autism leads to ignorance and discrimination. Lets put a stop to it!
I have a ten year old daughter whom was labled with autism a year ago by the school system since she has a PDD-NOS diagnois. It has taken time to absorb this label. I talk to her teachers and those who work directly with her and share infromation that will help make situations more successful. I do find myself confiding in co-workers and family members who will not judge her. I do not beleive in sharing it with her classmates and the other mothers since I beleive they will be judgemental and will not want their child to be a friend to my daughter. I feel the label of autism will limit the expectations of my daughter.
If someone asks I always let them know that my son has autism , however the number of people that are still unaware of”What” autism is is alarming. and when you are still dealing with the diagnosis your self, you just dont always feel like explaining it.
All of my family and friends know , but no one in my workplace knows, I feel like they may try and use my sons disability as a reason for instance if I am having a bad day
Autism Awareness. The more people that know about our children and what Autism is or is not. the better off all people with Autism will be. People tend to be more tolerable if they know.
I have an 11 year old son that is high-functioning. He has a form of autism. He acts pretty good in public now only saying things once in a while that are inappropriate. My ex mother in law was a special needs teacher for many years- she gave me the advice of “Never let them diagnose him with autism.” I said why- he deserves and needs the help through the school. She gave me the answer “Who would want to marry him?” I am so hurt. I am not ashamed and neither should he be. I told her that was no different than saying who would want to marry her- she wears glasses? What a blow to the heart. Is she ashamed of him?
My daughter was diagnosed at 6 with PDD-NOS on the Autism Spectrum.She is now 16, its been a mixed bag over the years. Most people are more understanding of her even if they don’t know alot about Autism in general. In my case I have family members who have never been on board with her having Autism. I just didn’t raise her the correct way according to them. It still amazes me that they keep getting the same results when they think she is acting up with them, when in reality they are seeing some of her Autistic behaviors. Like keeping her out past her bedtime she complains to go home or getting upset because she has food preferences. They say lame things like act your age. Believe me I have tried to get them informed. They just don’t believe.
My son was diagnosed with autism just a few months ago at 2 1/2. He’s been receiving early intervention services ever since and has been doing really well, though he’s still nonverbal. He looks like a typical kid in so many ways. My husband and I haven’t told our family or friends for fear they will look at him differently. I feel we need to give him a chance to pull through this before we label him for life.