If diagnosed as child: how did you learn you had ASD?

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We are preparing to tell our 9-year old son about his ASD, ADHD and Anxiety. He was just diagnosed a few days ago. We are just waiting on one more test to make sure of his level.

My husband and I want to make sure we do it in a positive way. He is a very bright kid (98th percentile iQ for age, at 130), emotional, and a sweetheart. But his anxiety and change in routine difficulties are usually an issue. So we want to make sure we do it in the best way possible.

If you were diagnosed as a child:

- How was this information told to you?
- How did you react?
- Would you have preferred a different way?

I was diagnosed with Asperger's syndrome at 8 and was told about it straight away. I reacted badly, and it made me feel unhappy about who I was and I just wanted my diagnosis to go away and be as label-less as all the other kids.

But don't let that discourage you to tell your child though. Every child is different so it's not easy to tell how one will react to a diagnosis. Most will not be affected by it at all, and I bet every Aspie here will advise you to tell your son about the diagnosises. Being so he's a boy he will probably accept it more. Me being a girl I was very sociable and having friends and being 'normal' was the most important thing to me, so as soon as I was told I had this label it just made me feel inferior to the other children. I wasn't diagnosed with ADHD until adulthood but I wish they'd diagnosed me with that sooner because it did describe me more than Asperger's did.

These days more kids are being diagnosed with HFA or Asperger's at a younger and younger age, where as back in the 1990s you were only diagnosed if your behaviour stood out enough to specifically cause concern for the teachers and your parents. So I wouldn't be surprised if these days more than 1 child from each grade will have a diagnosis of AS/HFA before they hit puberty. When I was growing up I was the only kid in my whole school with a diagnosis (I would have known if there were any others but I won't go into detail about how I knew because this post would be too long). So being the only kid with a rare label made me feel isolated and embarrassed. But not being the only one in a class with a diagnosis of ASD and/or ADHD probably makes it much easier to accept, as you don't feel so alone.

I was never directly told that I had autism. I was diagnosed with autism when I was about 3-4 years old back in the 1960s.

I would hear people talking about the "brain-injured nursery school" I used to attend. And I would hear about "brain damage" and "brain injury" all the time. I would also hear about autism. I knew that my parents were members of the "New York Association for Brain-Injured Children."

It was thought that I was "minimally brain damaged," especially after I learned to talk at age 5 1/2.

I was diagnosed as an adult not too long ago, but I just finished reading Tony Attwood's book "The complete guide to Asperger's syndrome" and there was a section towards the end about how to positively inform a child about it. It might be worth looking into the book for that reason and others?

I was diagnosed before I could even remember. Weirdly, I never really felt bad when I was being put in special ed settings back then. I also wasn't even put in special ed until the last couple of months of 2nd grade. I guess that was because the issues that would plague me for the next few years were getting started.

In 6th grade, my desires in life had shifted towards having a social life and a relationship. I moved to a different school after that year and all those previous issues(meltdowns, not understanding boundaries, etc.)were replaced with, well, being a high functioning teen with aspergers.

I love writing and went through a period where all my characters were either mentally ill or neurodiverse. Of course I couldn't do that without doing in depth research and that was when year 8 me stumbled upon autism. I told my mum I identified with the symptoms and she dismissed me at first because what I'd shown her was about severe autism. However, she and I both looked into it more and she was convinced it was what I had. We then told my therapist who said no way. After a lot of bugging her she let me go to be diagnosed and I left a long time later with a diagnosis of moderate ASD.

I was at the meeting and I remember feeling elated when I got the diagnosis because the misunderstandings caused by how an Aspie deals with problems were destroying my relationship with my mum and family. See this was at a point where I was severely depressed and had uh... attempted things. I argued with my mum 24/7 and would avoid coming back till REALLY late hours. This diagnosis finally explained everything as well as the difficulties I had with my peers and a lot of things that had happened in the past. The team were really informative and gave me a bunch of resources, their observations and what my results meant. I really liked being talked though it all step by step in a positive way because even though it's not all sunshine and rainbows, I think it's good when it is not dealt with as a death sentence.

Maybe mention the good sides so he doesn't just see it as a wholly negative label. If I could get rid of my sensory issues & anxiety I sure would but I love the way I think. I don't know what your son may be good at but that might help. Plus everyone has something they deal with whether it be a developmental disorder, health issues or something that happens in their life. Knowing that helps you feel less odd and if you find other NDs that can too. I hope any of this is helpful and it goes well

Many people focus solely on the negative problems that ASD bring and forget the positives. Therefore this list may be of interest:

Positive Aspie Traits
* They are usually loyal and dependable. Competing to get ahead is less important than solving problems and meeting challenges. Conscientiousness, faithfulness and devotion to duty matter more than ambition, especially if that ambition would cause others to suffer.
* Adults with Aspergers pursue ideas they believe in without being deterred by what others say. They are not easily swayed by others’ opinions, nor do they give up because someone tries to convince them otherwise.
* They are good at recognizing patterns and in classifying things. They are comfortable with order, precision and categorization, which make them successful in following rules, allocating resources and solving problems.
* They tend to be sincere, positive and genuine, which make them loyal and dependable friends.
* Speaking their minds regardless of the social context is true of many adults with Aspergers. They are much more interested in someone’s skills and expertise than whether that person is viewed favorably by others.
* Adults with Aspergers are especially good at noting and recalling details. They are helpful at work that requires knowledge of facts, details, and memory. They are often exceptional at the recall of details forgotten or disregarded by others. They have a passion for gathering and cataloging information on a topic of interest.
* An acute sensitivity to specific sensory experiences and stimuli, including touch, vision, and smell is common and having such unusual sensory experiences gives them a different perspective on the world.
* Adults with Aspergers tend to be trusting of others, even charmingly naïve. They are compassionate and caring, and many maintain the belief in the possibility of positive relationships.
* They are often direct, speak their mind and are honest. Many have a strong sense of social justice.
* Because they don’t mind being alone, they are often willing to engage in solitary work that others avoid, which puts them in the position of making tremendous contributions at work and school.
* They are able to comprehend multiple levels of meanings of words and ideas and can form connections that others miss.
* They are persistent, and when they set their minds to something or make a promise they can usually be trusted to follow through.
* A relationship with someone who has Aspergers tends to be free from bias and discrimination based on race, gender, age or other differences. They judge people based on their behavior not the color of their skin, socioeconomic status or political influence.
* They are not inclined to be bullies, con artists or social manipulators.

It is my perception that if an Aspie is raised properly and develops a think skin, they can become a non-conformist.

Quotes on Non-Conformists

Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They're not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can't do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do. – Rob Siltanen: Apple, "Think Different" campaign

It gives me great pleasure indeed to see the stubbornness of an incorrigible nonconformist warmly acclaimed. - Albert Einstein

Whenever you find yourself on the side of the majority, it is time to pause and reflect. - Mark Twain

Our wretched species is so made that those who walk on the well-trodden path always throw stones at those who are showing a new road. - Voltaire

Not all those who wander are lost. - J.R.R. Tolkien

You have enemies? Good. That means you've stood up for something, sometime in your life. - Winston Churchill

Do not follow where the path may lead. Go, instead, where there is no path and leave a trail. - Ralph Waldo Emerson

A "normal" person is the sort of person that might be designed by a committee. You know, "Each person puts in a pretty color and it comes out gray." - Alan Sherman

The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche

The average man is a conformist, accepting miseries and disasters with the stoicism of a cow standing in the rain. - Colin Wilson

Freedom began on the day the first sheep wandered away from the herd. ― Marty Rubin

I think it possible you have one thing which could make this an extremely positive exoerience for you both and that is that you are both diagnosed ascon the spectrum; you are in it together, rather than some poor child having a label put on them which in the child's mind may just seem to confirm the nasty things bullies have already told them or re-inforce unkind feedback from teachers.

It may begin best of all just by talkinf about the assessment as a way you and your child were having help finding out things you can do naturally and things where you need to look up the way to do them or ask for help.

That can then lead on to the information that you both can di some things naturally which a lot of people find difficult, and insert whatever feedback your assessments have given on the Strong points. Then there can come the harder bit, that the things we find difficult are, unfortunately, the things most people find they can do without muxh effort, the social stuff, guessing what orher people are feeling, any organising stuff, dealing with senses, whatever has come up in the repoets from your assessments. The name for all these ay not need to come intill quite late, or even wait to second or third time the subject comes up.

Plus yoy can let then know there is an awesome tribe out there for both of you.

Plus you can go to a great few days each year called Autscape and meet your tribe in person.

No one ever directly told me, except for the one Sped teacher.
No one in my household ever discusses it even now.

No one dared to, except for that one Sped teacher.


Even if no one directly told me, I reacted rather badly at it.

Even with the sudden knowing that I should accept it, the immature part of me would not and react like any.
It wouldn't matter what label it was, but simply the prospect or idea that I'm a 'special child' that made me react badly.

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I was diagnosed so early and in and out of clinics so much I was always aware of it. Especially when the docs and whoever talked about it like I wasn't there or couldn't understand them.

I'd say to ask him questions like. Do you know what all that was about? Would you like to know?