( Everyday Life with Autism )

This question keeps relentlessly imposing itself on my mind. To answer this question I decided to ask myself even more questions.

1- When can I talk to my child about her/his condition? At what age?

2- Is sooner better than later?

3- Should I introduce the subject and discuss it as a general topic and make it seem unrelated to my child’s condition?

4- Who would be the best person to introduce the child to this fact? Family? Professionals? Both together? Both individually?

5- Does the child have the right to know about his condition?

6- Do siblings need to know or have the right to know?

7- Does the bigger and extended family need to know?

8- Do all spectrum children need to know?

9- How should a parent prepare for this moment of truth?

10- How useful would this transparency be? What benefits could be reaped by revealing the secret?

11- What would a parent expect in regards to the child’s reaction to the disclosure?

12- Would it be easier for the parents to handle the situation if the child knew from the beginning?

The questions above helped me, I hope it helps you too, to find an answer. However, this will remain a personal matter whether the parents decide to share this huge piece of information with their child or not. Parents know their child best.

I personally believe that the child’s placement on the spectrum, and her/his functioning level is the most important factor in making the decision. If the child is very low functioning-regardless of her age- it would be useless to share information with her. It might be even harmful for the child to know the fact, in case she is exposed to bullies and dishonest people. Some malicious people can take advantage of this handicap.

In addition, even if the child was not a low funcitoning, but lives in a poor socio/economic population, it is needless to announce her diagnosis. The label in such a community will turn everybody’s life in the family into a nightmare. In some cultures children with autism are hidden from the society for their entire life. In some countries, disorders related to mental health, like a delayed development in this case, is considered a taboo. Parents do everything to camouflage their child’s disorder to avoid the stigma.

To test the grounds, it might be a good idea to open the subject and discuss it as a general topic. You’ll see from your child’s response how much aware she is of the topic. Take your cues from your child. If she is not offended by the idea of being different you may decide to tell her. If you notice that the subject has caused too much anxiety or irritation to your child, opt out.

Now assume that the child is fairly functioning and living in a reasonabley civilized community. Telling her that she is different than other kids may have either a positive or a negative impact depending on the approach you are going to adopt. If the difference is going to be pictured as a deficiency or a weakness, the impact on the child will be very diappointing and negative. However, if you tell your child that there are some areas that need more attention, and that you’ll work on them together, that will have a positive impact on the child. Try to elaborate on the child’s strengths first before you mention the areas that need improvement.

That would also be a good answer to the child’s logical question: “Why do I have to be in a different class, let alone a different school?”

According to your child’s awareness, readiness and openness to learn about her condition, discuss her diagnosis from the social-not the medical- standpoint. Show the child the bigger picture, before going into too much details. Wait for her questions instead of flooding her with information. Walk her into the discussion at her own pace. You may want to talk a little bit everyday, instead of giving a first big presentation.

Know that it is already very overwhelming and shocking for the child to feel segregated from the mainstream peers. Therefore, tell your child that her Special Day Class is actually a privilege to have, since she can do things at her own pace, in a comfortable and peaceful environment. Then when she becomes ready to join the regular education class, she is given the choice to go or stay.

Make sure to tell the child that being different is okay, and different doesn’t mean less or worse. We are all born with different color, language, ethnicities and still can live together. At this point if you have decided to make the announcement, know that sharing this fact with the child’s siblings would be very beneficial. They can be of huge help and support for you and their autistic sibling. If anything, it will bring more peace at home. Children are compassionate by nature. Same goes for the extended family members, they can support you morally and physically.

If you feel that your child got confused and seems to become uncomfortable after learning the news, ask your family doctor upon the next visit to help explain the condition.

Anecdote

A mother once told her high-functioning child that he has ASD. She descibed it to her son as a “different wiring of the brain”. The boy didn’t really comment on his mother’s definition of ASD. However, he kept asking her day and night to take him to see the doctor. The mother found that her son was perfectly healthy and didn’t show any symptoms that would justify a doctor’s appointment. But the boy started throwing temper tantrums asking to see the doctor.

Finally the mother gave up and got tired of her son’s request. In the doctor’s office the boy asked the doctor: “Please, fix my brain, you need to redo the wiring.” Yes; this is a true story!

The doctor was very understanding, and explained the disorder in a simple way by saying that everybody has a different way of thinking. And it is okay to think different and be different from others. The problem was solved.

I mentioned this anecdote to let you know that doctors and professionals can help you accomplish the mission. They are more distant from the situation than you, and are able to see the bigger picture. The mother wasn’t wrong by saying “different wiring”. It is absolutely right. The problem was that the apporach wasn’t the best. The boy is very literal, his mother should have chosen simple and general terminology to describe his condition.

And here is my final question: What did people do before autism existed as a diagnosis of a condition?

Deep inside parents knew that their child was different. But there was no other choice than sending her/him to school in a regular school and regular class. The child was expected to function as an average typically developed peer. And out of no choice the child would try her/his best to comply and apply her/himself to fit in the society as much as possible. Parents treated children as if there was nothing wrong with them.

Actually that was a brilliant way, not out of choice, to get the best of the child. There was no excuses, no double standards neither at home nor at school. The child would grow up knowing that the rule is the same wherever she/he goes. The outcome was great.

Naturally, the severe cases were exempted from schooling. When the child’s behavior represented real issues in school, parents had to be fully responsible for raising and educating their child. This is when special education classes are needed the most.

Nowadays, parents are tempted to place their children in special education to benefit from the services.

So, label or no label? That’s the question.

Conclusion

Parents, you know your child best. Take your cues from your child. Follow your instinct.

Debate to be continued.

nadia schanab

Tags: autism, parenting, special education