What I want you to know about having a child with Asperger's Disorder

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by Lauren.

My son is diagnosed with Autism Spectrum Disorder (ASD), high functioning autism- aspergers. But that is just a label. He is not autism, he is not autistic, he HAS autism. That may just seem like semantics to you but to my family it is critical. Your child is not brown hair, or blue eyes, your child has these features just as my son has a collection of traits that collectively are known as ASD. I love about half these traits which we are often informed as negatives: My son’s amazing memory, his formal speech, his attention to details. Other traits make me crazy: his difficulty separating fantasy and reality (we have to be very careful what we watch, read and say), his difficulty reading people (social outing can be very challenging). Most of all I hate how anguish he gets. No one wants to see their child so stressed that they have lost all control, or your child hurting themselves (we now bite our finger nails down till they bleed, before we had any help we banged our head on walls and scratched and pulled at our testicles till they bleed).

Development has been delayed and lop-sided for my son. For example, it took a very long time for my son to talk but when he did, he spoke in a very formal fashion and said rather grown-up phrases like “I am delighted to see you”. Despite his above average IQ and his ability to hold adult conversations, he at almost seven is still struggling to read simple words and hand writing has been its own struggle requiring many hours with the OT. School has been by far our biggest challenge so far . . . . finding a community that supported him, that would help him achieve his best and not just see him as a stupid child and let him rot in the corner.

I want you to know that we have good days and we have bad days. On good days I can almost forget that my child is ‘different.’ He loves me and his dad, he plays with his baby sister, helps me cook and walk the dog, plays with his friends. On bad days I worry about the future of our family. Will we be able to always get the care and support my son needs? Will his violent melt downs get so bad that it is no longer safe for the rest of our family to live with him? Will his anxiety lead him to self-harm? Will he commit crimes because he doesn’t really comprehend what he is doing? But most of all I worry if there will always be a place for him in our community. Will people accept him for him? Will they see the funny, kind-hearted person I see? The person he is, increasingly more and more as we get him the help he needs. We have been blessed with amazing therapists doctors, teacher, hair-dressers, dentist and friends who all play a part in making our lives easier and better.

I want you to know that I am a mum just like all mums, no better no worse. I didn’t cause this through neglect or lack or bonding. I did everything ‘they’ say you should. And after hours and hours on the floor crying I have come to realize that my child is indeed wonderfully and fearfully made by God. And for whatever reason this is the package my child was born with. I am not super-woman or any more amazing than any mum I just doing what all of us do, loving my kid trying to get the best for them.

I want you to know that there is more than one person in my family and as the mum of this family I need to balance all our needs. There are four of us in total and we are not successful unless we are all reaching our best. It is not success for us if my son gets all the therapy he needs but we are bankrupted in the process, or if I don’t have time to bond with my baby girl because I am constantly driving my son to appointments. My husband and I have the right to have happiness. We didn’t give up our right or need to be people in our own right when we became parent we will not succumb to the pressure and forgo our relationship.

I want you to know that I could not love my son anymore, I wouldn’t love him anymore if he didn’t have Aspergers. He is amazing in a million ways and yes, his young life has had more obstacles than I would have liked it to but it is these experiences that have shaped him and our family. I look at us on a good day (and there is increasingly more) and I am very happy with how we are all traveling.