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.
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.
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.
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.)
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.
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.