The truth is having a child with autism is different. Your child is going to be different, your family is going to be different, and your life is going to be different. Though I was in the field for over a decade, I never understood the impact a child with autism really has on a family until that family was mine.

The truth is I feel cheated. Just like any other mother, I carried a child. I endured terrible morning sickness, experienced back pain and exhaustion. And when my baby was born, just like any other mother, I loved my child unconditionally. I immediately dreamt of what he would be when he grew up, what type of girl he would marry, and what type of man he would become. When my child was diagnosed, I felt cheated, not knowing if I would ever be able to experience all of those hopes and dreams.

The truth is I feel envious.  I feel envious of parents with “typical” children. Sometimes I find myself watching these children, marveling at their innocence, incessant chattering, and genuine interest in everything and everyone around them. I’m envious that these children are starting to build special friendships with their peers. I wish that I could see the joy on my son’s face for even a second as he plays with another child, because he is genuinely enjoying the company of his peer, not because he has to complete a task.  Sometimes I feel envious of my friends, of how simple it must be for them to get out of the house without a severe meltdown or drive in any direction without screaming and head banging.

The truth is sometimes I feel that nobody really understands. Quite often my friends or family will say,He doesn’t look autistic. While I’m sure their comments are well-intentioned, it indicates that many still do not understand what autism actually is.  They may not know that autism continues to be somewhat of an enigma, because most children with autism appear typical, despite their deficits. Sometimes, I feel that nobody understands because my son acts like a perfect angel in their presence and completely the opposite when just with me.  I would be rich if I was given a dollar every time someone said, “Stop worrying, that’s typical,” or, “He’s just delayed; he will catch up.”.

The truth is I feel isolated. Many would assume that my experience as a BCBA would have prepared me to know exactly what to do in every situation. Most of the time it’s quite the opposite. I feel isolated as if my son’s autism holds me prisoner. Sometimes I feel isolated when I chose to remain in our home instead of participating in activities with our friends and their children. Sometimes I feel isolated when I go on social media and I see our friends with their children doing fun things that our son would never be able to engage in at this point.  I feel isolated when I am the only parent at a birthday party, chasing after my child to redirect him from engaging in ritualistic routines or having to leave early due to a severe tantrum because he got denied access to opening and closing the ice chest for the 100th time.

The truth is I feel lucky. I feel lucky because the diagnosis’s adversity on our family will in the end make me a better person–a person who will be more patient, sensitive, and compassionate towards others. While being an autism mom is not easy, I feel so lucky to know my son.  I feel lucky that he chose me to be his mother. While there is so much hatred in the world, I can always count on his kind, innocent nature, free of judgment or hate for other people. I feel lucky he loves me unconditionally, even the days I feel like a complete failure as a mother. Even though the autism journey is a difficult one, I feel lucky to be this journey with my son by my side.

These are some of my truths about being an autism mom.  I would love to hear some of yours!

  1. This is a wonderful, and very accurate article. My only gripe is that it should be titled moms and dads, since I go through it just the same as my wife when it comes to our son! Please don’t discount the role that fathers play in raising an autistic child.

  2. It is frustrating, heart-breaking, difficult beyond words, this is true. It is also a blessing. When you are an autism parent, you don’t just “get through” each day. You notice all the little things— a button fastened without help, trying a new food without protest, playing WITH a peer, not beside them. You pay attention to a million insignificant things your child does, that another parent may not. You carefully file them away. Autism parents are patient, observant and understanding. We were given these children for a reason. Whenever I question “why me? why my kids ?” They make strides that take my breath away, I am very grateful and honored to have my special boys.

  3. I feel exhausted, after all the years of traveling in the autism world the day I leave this earth, I have no confidence or trust that my son with Aspergers/Autism 1, will be living a life with the proper supports. Without train loads of money this is near impossible. When rejected by your own family, and entities that offer hope with a huge price tag what is the path? I feel anxious every time we hold up Temple Grandin as the guru of Autism. This is a complicated disorder like no other, where each individual can be described as a dimensional complication of multiple disorders at different levels. Most Parent groups fall apart as quickly as the are put together. We are divided by the medical and homeopathic communities, we are divided by the profound and high functioning individuals. This disorder requires that a caregiver give 100% of there time to the care of someone else. Or hand them over to the entities you need to trust 100%.
    Autism for me has illuminated the flaw in the human condition, not that of the individual on the spectrum, but we as a society who lack the depth of character to support this growing population. 21 year later, I wish I could say we have make great strides. But if you are a parent of one of the children on the spectrum ask yourself where will your child be at 50 years old when you are no longer here?

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