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Even with Autism Awareness, Do Other Parents Really ‘Get It’?


Being an autism parent comes with an inherent number of trials that most of us aren’t prepared for. Thankfully, there are some amazing people in the world who ally themselves with special needs parents and naturally show a great deal of empathy.

But, unfortunately, the majority of people really don’t understand what living with autism is like for a family.

5 Basic Facts About Autism

1. All autism is not the same.

There’s a saying that if you’ve met one child with autism, you’ve met one child with autism. Due in large part to movies like Rain Man and news stories focused on children with severe disabilities, it’s hard to remember that autism is really a spectrum with varying degrees of severity. Each child with autism can have markedly different characteristics and many can go unnoticeable to the average onlooker.

2. Autism is more than just a mental or emotional disorder.

Most autistic children have a laundry list of disorders to battle with. It is not uncommon for children with autism to have another diagnosis such as ADHD, obsessive compulsive disorder, anxiety and/or depression. They also have a tendency to suffer from asthma, environmental and food allergies, food intolerances, gastrointestinal disorders, seizers, chronic ear and sinus infections, immune disorders, motor planning delays, intellectual disabilities, sensory issues, speech disorders and more.

3. Yes, we do weird things to heal our children. (You would, too.)

When faced with the autism diagnosis, parents are usually given a grim prognosis from the mainstream medical establishment. So, many of us take things into our own hands and embark on a path of alternative healing that the regular population doesn’t understand. We give our kids lots of supplements, we eat strange foods, we visit alternative healers and we may even stop vaccinating our children. (Gasp!)

But, we don’t take these decisions lightly. It’s not just an internet fad or something we picked up from a celebrity spokesperson. We spend a tremendous amount of time and energy researching viable treatment plans for our kids. We attend conferences and sit through webinars. We are constantly consulting with doctors, with friends, with our spouses and with online support groups. Ultimately, we make decisions based on what is in the best interest of our children, using the information and resources we have available. (So don’t judge.)

4. Just because you don’t see signs of autism in our child, doesn’t mean it’s not there.

Usually it’s because there’s a lot of work going on behind the scenes. All those crazy healing techniques we used with our kids are working and they are overcoming many of their disorders. But, we autism parents know that a lapse in treatment can mean a serious regression. So, we stay on top of it even when it appears our kids are doing great.

5. Stress, depression and anxiety are a large part of the autism parent’s life, so give us a break.

We take on a lot, there’s no question. Under the surface, there are a lot of emotional scars, a lot of worry and a lot of self doubt. So, it’s even harder to contend with people who don’t get where we’re coming from. It’s difficult when we have to explain ourselves. It’s hurtful when see our facebook friends post about the non vaxers being selfish or irresponsible. It’s hard when we hear someone say that we just need to discipline our children more or that a swift spanking would do the trick. And, it’s distressing when family members expect more from us than we’re able to give. Don’t get me wrong, we are not looking for a pity party…but we do need understanding and compassion. We need awareness of what it’s like to live with autism.


This was guest post was written by the parent of a child with autism.

This post was written by a guest writer for Prime Parents Club. We are not currently taking new guest writers.

3 Comments

  1. Tara

    June 10, 2014 at 12:26 pm

    Absolutely on the money. Alex is 26 now, looks like 13, and thanks to almost a million dollars worth of therapy{Im not kidding, we once counted it all up} he can appear, from a distance, to the casual outsider, like a normal every day young man. Hang around us awhile you’ll get the real story as you see he cannot converse, laughs for hours on end, retreats into strange trances and spends roughly half his waking hours doing The Happy Pine Cone Dance. {Don’t ask}Reading, writing and having a friend are completely off the table.
    The only thing I dont agree with is the anti vax deal….toodle on down to any Victorian cemetery and you can see what childhood diseases did to families back then….there is a far greater risk of blindness, retardation and death from measles and scarlett fever, and if the vax thing is true, why are 9 out of 10 autistics still male??? do girls have super power immunities???

    • Denise

      June 10, 2014 at 9:24 pm

      Our beautiful Lauretta, 21 now, has been residential placed for 5 years. I see her every week and miss her in our home. She smiles and waves goodbye when I leave. When here, I taught her some sign language so that when there was complete meltdown…others would understand she was not a typical child. It helped. It helped outsiders understand. Unless you go through it..you can’t know. Very few people..even in my family understood. I learned much from her. Patience…Always happy to see me. Lives in the moment. Her glass is always half full,, never half empty. There is no link for vaccine and autism….Maybe one day there will be an answer to why.

      • Tara

        June 11, 2014 at 7:09 am

        Your reply makes me want to give you a cyber hug.We are humbly grateful that Alex has been able to remain with us but is has been at some cost and we dont have much of a life beyond his needs. However,we have enough support to make day to day existence Ok enough, and he is evolving in some good ways.In addition we had two relatives with Alzheimers to care for in the family, so compared to them Alex was a walk in the park!!!

        I think the whole “autism is on the rise” trend is a highly subjective issue…yes, everywhere I go I encounter SOMEONE who is experiencing its effects…. or they think they are….then I hear that the “autistic” has been mainstreamed, is graduating, is getting a drivers license,is going to college and is getting engaged. Hey, I want one of those!!!These incredibly high functioning individuals, whatsever their problems may be, grab the publics attention and make people think autism is a matter of mild eccentricity, not to mention genious. Everyone who meets Alex assumes all autistics are akin to Big Bang Theorys Sheldon Cooper, and, sadly, that aint so.