Brother and sister playing together, siblings play home on chess

When Kids Ask What's 'Wrong' With My Son Who Has Allan-Herndon-Dudley Syndrome

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Sometimes children come and ask me what is “wrong” with my son. How come he is not running and playing with the other kids? I thought long and hard of what the answer to that question should be. Children understand things that sometimes even adults struggle with. But what I have noticed is children feel more than they understand and sometimes, what they understand is filtered through their feelings.

If there is one thing I learned during the last years is that exclusion starts from home. Society comes to strongly reinforce what people have already led their children to believe. Most parents don’t even realize they are doing it because it has to do with their feeling of “normality,” which they expect to be accepted as a given.

In my opinion, social “normality” does not exist.

The problem with this approach is that a parent would start from the premises that their actions and their children’s actions need to fit, embrace or otherwise obey the society rules. So they are raising their children to fit in. Which is not absurd but I believe this defeats the purpose of parenting.

I believe a parent’s purpose should be to nurture and shape the child’s world within. Help them learn how to express better their needs, how not to be scared of expressing their feeling no matter what society will label them as, how to solve their own problems without always looking for the easy way out, how to ask for help when they need to, in short, how to think independently.

The thing is, society changes its “rules” every generation. Many of the rules parents are familiar with from their childhood and perhaps trying to impose to their children are already obsolete. Why is it important to give children a chance to shape their own society, with their own set of new rules? Because the old rules are often broken.

For generations we keep hanging onto stereotype thinking, but unless we let go, they won’t disappear. Things like:

A child screaming in the supermarket. Everyone gives killer looks to the mother – the “bad mother” look; the “make him stop” look; the “you are bothering me” look and so on. Succumbing under social pressure, the mother chastises the child.

A child has a repetitive spastic movement in his wheelchair in the middle of a crowded mall. People either look at him like at a wounded animal that needs to be put down or turn their faces in disgust. His parents begin to take him out for walks only after dark.

It takes strength to go against the “society rules,” and when you are a parent, strength is something you don’t have to spare. Here, as in many other countries, under the shiny glow of the special needs programs and activities there lies an old and twisted belief that it’s a shame to have a child with disabilities. You would think this mentality is only reserved for a small population of people, but you would be wrong. We even had a doctor telling us it’s bad for his soul (the doctor’s) to have a patient who will never improve since he has a syndrome.

Getting back to our story. I decided to explain to the kids that my son Andreas-Rares is like a fish in a forest. He’s is perfect as he is. He is neither “damaged” nor inferior in any way. He is just in a place that wasn’t built to support him, like a fish in a forest. Just because it’s harder to get to know “his world” doesn’t mean that it’s less valuable or less meaningful.

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Thinkstock photo by Aynur_sib

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My One Regret as an Adult Diagnosed With ADHD and Autism

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I stumbled across the following question on a site I regularly contribute to:

“What are the biggest regrets a person with ADD/ADHD has?”

I like the way my answer turned out, so I’d like to share it with you.

My only real regret is that I didn’t start receiving help earlier. But I have faith that everything happens for a reason, and if that means not getting a diagnosis until I was 25, well, then that was exactly when it was meant to happen.

I often wonder what life would have been like had I been diagnosed in, say, preschool when my traits first became obvious. I’m also diagnosed with autism (of the type formerly known as Asperger’s), OCD and anxiety. The latter two diagnoses also came at 25, and I didn’t get the autism one until I was 31.

Although I endured some struggles, I managed to come out pretty successful. I have a Bachelor’s in Social Work and three jobs in human services. I don’t yet live on my own, however it doesn’t bother me that I’m not yet ready. One thing at a time. Besides, it just gives me more time to work, make money, and take life at my own pace.

Had I been diagnosed earlier, where would that leave me? Sure, I may have had an easier time with things, and known more about myself earlier on, but what if I just became another statistic? Another kid thrown into the special education system which is still in need of great reform today?

I was in all regular classes, and demonstrated that I could handle them, given there were no diagnoses yet in sight. Had I been slapped with labels from the get go, perhaps my abilities would have been overshadowed by them. I don’t like to look at my diagnoses as “labels,” but rather “titles,” as they have given me many answers about myself. However, in some cases, they are seen as only labels and people look for what they limit, rather than enable, in a person.

I’ve seen friends go through the special education system, friends who have outstanding levels of intellect and could easily have gotten a degree. However, they were set back because they were not awarded the same diploma as their peers. I feel the system has failed them.

If I have any regrets, this may be the only one, but at the same time, I feel very fortunate to have gotten as far as I have. And I can use that combined with what I now know about myself to help others in similar situations.

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Autism and Dating

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As an adult with autism, I do everything a bit differently than most, so it should come as no surprise that I have a partner who is different than most.

He is kind, intelligent and compassionate. It sounds cliché, but before he and I began dating, some of his good friends were autistic! He is knowledgeable about autism, and what he can’t relate to, he tries to understand.

I believe the key to autism and dating is understanding and open communication. Dating can be complex and difficult, and when you add autism to the mix, it can bring a new set of unique challenges. Often, those of us on the spectrum have difficulties carrying out social norms in romantic relationships. It can be difficult for us to sit through a long meal and “appropriately” converse with our partner’s family members for various reasons. Many on the spectrum also have different needs when it comes to sensory input, touch specifically. Sometimes we might crave more touch than average; other times, even though we care deeply for our partner, we may not want to be touched by them. It’s not necessarily anything personal having to do with the other person; it’s just different sensory needs/perception.

Most autistic individuals prefer to have a schedule or a plan for upcoming activities. They may become upset if that schedule or plan is altered in some way, especially without a timely warning. Adapting to or working around another person’s routine can be challenging.

Every relationship has its difficulties, and every one is unique to the involved individuals. In my experience, autism has a way of altering these difficulties. It is always important to have open communication! Both people need to be able to honestly speak their minds about a given situation or activity. When dating someone with autism, it is important to know how that person’s autism affects them. In doing that, it’s advisable to create a plan for working through and or preventing meltdowns. To someone who’s not used to it, helping an autistic person through a meltdown might be stressful and upsetting. No one wants to see their loved one hurting. That’s why it’s important to openly discuss what is helpful and what’s not for a particular individual.

Children with autism grow up to be adults with autism. We have the same feelings and urges as anyone else. We just tend to express them differently. The right partner is understanding of that. The right person will be accepting of an autism diagnosis, and both people will seek to grow together. Each person should support the other, even if it looks different than “normal.”

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