Does a formal autism diagnosis lead to being stigmatized for life?!

“My son just turned 11, is in 5th grade and it’s suspected he has high-functioning autism. He is super quiet at school, does not have any friends, hangs out by himself on playground and lunch, has a strong fear of the school fire alarm. At home he is talkative but does have many routines as well as he sometimes checks things excessively. With extended family he is talkative and great, and walking the dog he’ll converse w/other dog owners, etc. (same at tennis lessons, pretty comfortable with others). Does not have any friends but wants them and is very aware he’s basically silent at school and wishes he wasn’t I believe. 

Recently, the school psychologist suggested he be officially diagnosed for then he will get all the services available from now on. I’m very concerned he will be stigmatized and teased from now on if we do that formally at school. What do you think? I want the absolute best for him all around and I wonder if he were stigmatized at school, that humiliation may stick with him the rest of his life. (Obviously, I wish for a way to teach him the social skills to be comfortable around others, know what to say, etc....I guess to be more like everyone else)."

RE: “I’m very concerned he will be stigmatized and teased from now on if we do that formally at school. What do you think?”

I would strongly encourage you to forget about the “concerned he will be stigmatized” argument – he’s already stigmatized. If he has a hard time relating to his peers at school, then he is most likely “labeled” by his peers at some level already (e.g., shy, backwards, strange, doesn’t fit in, or any other labels that children attach to one another). In other words, the other kids already know that your son is somewhat different in a sense. Kids are very smart, and they pick up on even the little things at a deeper level than we give them credit for.

Getting a formal diagnosis is not going to change much at this point, especially if things go as they are supposed to. That is, the only people to know of the diagnosis are the teachers, psychologist, and you. The other students don’t have to know – nor should they.

I agree with the school psychologist that your son should go for a formal assessment. It’s better to know than not to know. If you have high functioning autism (Asperger's) and don’t know, it affects you anyway! If you do know, you can minimize the negative impact and leverage the positive – and there are many more positives than negatives!! Without the knowledge that you have high functioning autism, the tendency will be to fill in that void with other, more damaging descriptions (e.g., I’m a failure, weird, a disappointment, nobody wants to be my friend, and so on).

It is never too late for any child to increase self-awareness in order to capitalize on strengths and work around areas of challenge. Realizing you have the disorder doesn’t have to deflate your self-esteem. Knowing about high functioning autism gives you and your son an explanation, not an excuse, for why his life has taken the twists and turns that it has. It’s very important information to have.

If you thought your son had diabetes, wouldn’t you want to know? Of course you would. This is not much different. Both conditions (even though one is physical in nature and the other is developmental) are very treatable. But you can’t treat it if you don’t know you have it.

Get the assessment. In hindsight, you’ll be glad you did.

Parent’s response: "Thank you, that all makes sense. The psychologist at school said they were going to do an assessment at the end of the school year (I'm not sure why so far out.... I have a call in to her to call me back). In the meantime, are there things we can do or practice at home to help him (especially with conversation skills with kids his age)?"

RE: “In the meantime, are there things we can do or practice at home to help him (especially with conversation skills with kids his age)?”

I hate to sound like the "just don't worry about it" therapist, but this does fall into the same category. Here's the deal: your son is shy around unfamiliar territory. Conversation "skills" don't fix that. Time, however, does. As he matures and accrues life-experiences, he will become more comfortable in his own skin - and in the world. Until then, let him be who he is - and let him deal with his social anxiety as he does. Again, he will grow out of his shy nature to a significant degree eventually. This is an anxiety issue, and teaching conversation skills would simply treat a symptom of this - not the core issue.

I think you, too, need to relax in general. I'm starting to see a pattern here with you. I don't mean this in a disrespectful way of course, but sometimes the parent is so uptight about a number of issues that it makes the child uptight as well. He is picking up on your anxiety. Make sense?

Mark Hutten, M.A.

Resources for parents of children and teens on the autism spectrum:

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


•    Anonymous said… It took until he was 13 for us to get a diagnosis for our son, he said it was a relief to understand why he found some things so challenging. Now with the right support from those around him he is planning to move away next year and study at university.
•    Anonymous said… Thank you for sharing this. It really helped address some of my concerns
•    Anonymous said… The best thing I have ever done for my daughter was too finally have a diagnosis. Had no idea it was Aspergers and nobody pointing us in the right direction didnt help. Its was a call to Autism SA to ask about sleep cues they use for Autistic children, because our daughter had trouble going to sleep that I finally felt I was being heard. The lovely lady asked about our Daughter and said she ticked a lot of boxes. I now feel I understand her and can help others understand her.
•    Anonymous said… Yes! Get him evaluated by a psychologist. I fought it for a couple of years myself. At the end of second grade, a teacher who we adored and trusted told us to get him evaluated and diagnosed. Once I started doing some research I realized my son had most of the traits of Aspergers. Now my son gets a lot of help at school, much more understanding teachers (although some are still not great) daily sensory breaks, social help, etc.
•    Anonymous said… Yesterday my 10 yr old was diagnosed with Aspergers. He is very smart, and funny. He told me, "Mommy now I know things will get easier now that you guys will be able to understand me better." My sweet sweet boy taught me a valuable lesson yesterday. Any advice would be appreciated.
•    Anonymous said… A diagnosis can only help. They will give you a lot of information when they give you the results so you will know more about where he is struggling. My son is high functioning and is in a social skills group at his school. It has helped tremendously. Since he has a diagnosis we were able to get him an iep and from there give him the services he needs. I know seeking a diagnosis is scary. However, you will truly understand your child better after you go through the process. Then you can get the school to help by giving him an iep and services such as a social skills group. Also it helps the teachers to have an iep to know exactly what supports to put in place.My child isn't ostracized from having a diagnosis. If anyone asks he is very direct with them about his diagnosis. There is no shame in a diagnosis unless you make it that way by your attitude toward it.
•    Anonymous said… Having a label, a 504, or an IEP won't always solve the problem unless there is something specific that the school should/can/will provide that is for the functional school setting. Being "the quiet one" has actually gotten my youngest son praised as the well behaved student. Integrated school or after school programs could help with making friends ( best buddies, big bother big sister, boys and girls clubs). I have found that making sure my kids go to the public school they are zoned for and trying to make note of kids that we see on the way to and from school helps. The fire drill is also an issue for my oldest son but because they are scheduled drills about the same time each month he has accepted the routine. If there is something that you are worried about that could cause him to get into trouble then a behavioral modification plan could be the easier form to set up with the school as a precaution.
•    Anonymous said… He already doesn't have friends at school, an iep can't make it worse. My son had the same issues with making friends, they will come. Find what he's interested in , gaming, horses, playing an instrument and get him involved somehow and chances are he will find a friend a lot like him. IEP has been very helpful for us. Friends will come, be patient. Get to know his teachers, school can become overwhelming or difficult and teachers need to be aware of their diagnoses or your child could be mistreated not by the students but by the teachers. You are his voice.
•    Anonymous said… I disagree with the response related to conversation skills in the reply. I have an Aspie that is also 11 and he has made great strides socials because of the social skills discussions and practices he has had with a speech pathologist over the past 5 years. She has helped us identify challenges and ways to explain relating to others to him in ways he would not have developed on his own. I personally would encourage an evaluation outside of the school and seek a speech pathologist who has worked with high functioning autistics ASAP.
•    Anonymous said… I would have it documented at school, but request that it be kept confidential from other students in his class. That way, they'll never know and your son won't get teased.
•    Anonymous said… Knowledge is power. A diagnosis doesn't have to be a label. And one can only be stigmatized if one allows that. You & he can Gain knowledge & understanding of his disabilities and use his strengths & work on any weaknesses.
•    Anonymous said… Look a diagnoses isnt the end of the world. Kids are mean and probably already tease him because he is so quite. If your child could have a possiblitity of Diabeties wouldnt you get him diagnosed and get him what he needs. Its the same thing with Autisum. I see kids with HFA as gifts. There are so many people that are CEO and very successful that have HFA. My son was diagnosed at the age of 6 almost 7 and now that I know I have been able to do the research and learn how to help him, and most importantly help him understand himself.
•    Anonymous said… My son is for the better since being diagnosed high functioning and getting early services. I've never felt he was stigmatized at school,if anything it's helped him immensely!!! I think his classmates have also benefited and have learned how to be more compassionate toward people with disabilities. If I had to do it over again,I would choose the same road. I wish you the best for you and son.
•    Anonymous said… This sounds exactly like my son. He is diagnosed with HFA, Tourettes, and ADHD. He does not have an IEP and they refuse to give him one. He receives no services at school. He is in all advanced classes. He loves being an Aspie and has never been bullied or picked on about it. He has a few goods friends, but mainly keeps to himself. I think what has helped him make friends is his art ability. Other kids have noticed him drawing and have started conversations with him. We do social skills at home and go to a group.
•    Anonymous said… We must remember that the 'label' a child is given when they have an IEP or section 504 is virtually invisible. Other children or teachers other then your sons teacher will likely never know that he has a 'label'. Teachers take their students privacy very seriously and will not be talking about him to others. Let's take a quirky kid for example. His peers will already know he is quirky and likely he does as well... Having a 'label' will not change it. But having a 'label' could provide him with additional support in learning appropriate social behavior that will benefit him for the rest of his life.
•    Anonymous said… With out my daughter diagnosis things could have gone much worse. Sensory issues and anxiety and the struggle w/ socializing and processing information, The staff knowing was a much better situation. She simply would not have graduated. If the student is smart and can deal w/ said issues well...just think how much more he can do w/ accommodations. The sky is the limit.
•    Anonymous said… You have to get him help to get through school. A diagnosis may be the only way for you and your family to get additional assistance or modifications to improve his experience. I put off getting a formal diagnosis for years and now we are all suffering because of it. His teachers may label him as a bad or weird kid if you don't get involved and get everyone to understand what he needs. Good Luck and hang in there. He is so worth it. Do whatever it takes and do it soon!!
Please post your comment below: 

Popular posts from this blog

List of Symptoms for High-Functioning Autism

The Telltale Signs of ASD Level 1 [High-Functioning Autism]: A Comprehensive Checklist

Traits of Partners/Spouses with Aspergers