What Not To Say To The Parents Of A Child With Special Needs

Autism…A Journey

I have been an Autism parent for eleven years now. A journey that has not always been easy, especially when my son was first diagnosed at the age of six. Although I knew that he was on the spectrum when he was 18 months, no one else believed me. His Pediatrician didn’t see it, our child Psychologist missed it and diagnosed him with ADHD and ODD (Oppositional Defiant Disorder) instead, and everyone else around me thought I had lost my mind. But eventually we fell into the right hands, he was diagnosed at the JGH Day Program and I was able to get him ALL the support he needed from then on.

Over the past five years, I have had the pleasure of finding some of the best people to work with my son. I have also come across those that just didn’t cut it. Luckily, we moved on quickly from the latter and didn’t waste too much of our time. Since Autism has become somewhat of “a business”, it’s not so easy to find good help in the private sector and the waiting lists in the public sector are horrendous.

Another Side of the Journey

Another side of our journey has been the often inappropriate things that people have said to me, and still say to me from time to time. I am sure that other parents can relate. Believe me, you are not alone! I do not believe that any of these comments are said maliciously. I believe that some feel so uncomfortable, they don’t know what to say, some don’t think before they speak, and some simply don’t have any knowledge nor understanding about Autism. The following is a list of what NOT to say to an Autism parent, EVER…please!

What Not To Say

“He doesn’t look Autistic, he looks normal to me…” Autism does not have “a look”. And what does “normal” look like anyway? Think about that for a minute!

“Will he be cured…does it go away?” Autism is not a disease that needs to be cured. In a nutshell, it is a developmental disorder characterized by challenges with social interaction and communication, often including restricted and repetitive behavior.

“Oh no, it can’t be. Are you sure?” Now, imagine in my case. Having to fight for 6 years to have him diagnosed properly, and someone says this to me! When first diagnosed, parents are going through unimaginable emotions, they don’t need to be questioned and made to feel as though a mistake was made.

“I am so sorry to hear that”. My son did not die, he has a disability. He is NOT less, he is just different.

“He will outgrow it”. No one “outgrows” Autism Spectrum Disorder. With proper interventions, therapies, direction, and sometimes medications (natural or otherwise), the person is better equipped to “handle” their disability. As time goes on, maturity and neuroplasticity also help.

 More of What Not To Say

“Does he go to a special school?” Not all children with Autism need to go to a specialized school. Many are fully integrated in a regular public/private school. Some require an aid with them during school hours and some don’t.

“He behaves like that because he doesn’t get enough discipline at home”. Discipline does not “cure” Autism or any other disability. Every behavior has a function. Most behaviors that are negatively perceived stem from severe anxiety, sensory overload, and inability to communicate. They have nothing to do with being spoiled or lack of discipline.

“I think your standards are too high for him”. An educational consultant actually said this to me when my son was in grade one. My son is now in grade 5 attending a mainstream private school, with above average grades in all subjects. The only subject that has been adapted for him is French. He is now mastering the breaststroke in swimming, made the school soccer team, and has recently started boxing and martial arts. No one has the right to tell any parent what their child’s limits are. Everyone shines in the right light!

“You are making him a different meal? My kids eat whatever I make or else!” Many people on the Autism Spectrum struggle with sensory issues surrounding food. The textures, smells, and tastes of certain foods are simply not tolerated. To add, please do not comment nor judge people’s diets. There could be a list of reasons why a person eats a certain way, it is not for anyone to judge.

More Awareness

Although I think people are generally more aware, accepting and educated now, we need to teach more! I think that people are still “afraid” of Autism. Most of the time, they freeze and don’t know what to say. An Autism parent needs constant support, encouragement, respite, and validation that they are doing the best job possible on a daily basis. Autism is 24/7, 365 days/year, and does not end at the age of five! To add, we have our chronic worries about adulthood and what will happen to our kids when we are gone. Especially those with children who are nonverbal and not as autonomous.

What to Say

Most of the time we just need to be asked “How are you doing?” “How is your child?” “Can I do anything to help you?” And please…there is nothing wrong with being curious and genuinely wanting to learn. I would rather someone admit that they know nothing about Autism and ask me to teach them a little about it than not ask me, assume the worst and make judgments.

 

 

 

 

 

2 Comments

  1. Hey Angela,

    I appreciated and enjoyed your article “What not to say to a parent with Special Needs”. I can relate since my 15 yr old little brother is Autistic.
    I’m very passionate about helping families with special needs because I know the challenges that my family experiences. I’m curious to learn what services you wish would be available or better in the private sector?

    All the best,

    Gia

    1. Hi Gia, thanks so much for the feedback! Well, first I wish that private services could be more affordable somehow, especially for those that have been on long waiting lists in the public sector. And that somehow the government would help families to be able to afford some private services if need be. We sold our house to get my son the services he needed. In my experience, I found that it was challenging to find people with a decent amount of experience to work with my son and who was a good “fit”. Someone who could come up with behavior & educational strategies while implementing them at the same time. The same person to do both. It is also not easy finding someone WITHOUT an ABA backround/approach. Not all Autistic kids need ABA, nor fit the ABA profile. I hope this answers your question. I would be more than happy to discuss furthur. I always have loads more to say on this topic! Feel free to email me at angela.maciocia@gmail.com

      Thanks again..Be well,

      Angela

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