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The ASD Family: Feeling Our Differences

              I read somewhere that the first thing a parent with children on the autism spectrum realizes is that other families do not go through the same struggles with their children as we do.  We see other families in the supermarkets, the parks, and at school, and they do not seem to struggle the way we do. The relief of the diagnosis is that we now at last know why, we have a reason; it is not just bad parenting.

That realization goes double for the parent of the ASD child, who is on the spectrum herself. I naturally assume that other people go through the same things that I do. I never considered they were experiencing their lives differently. I just assumed the problem was me. I was a terrible mother—my children were undisciplined because of my parenting.

I could not keep up, and it was MY FAULT.

I was peripherally aware that others seemed to be doing better than me, that other children were calmer and more behaved.  Because I do not socialize with other parents, and my friends and family live 600 miles away I live fairly isolated. The isolation has sheltered me somewhat from really feeling the difference between my family and other’s.

My brother stayed at our house with my two year old niece over the Thanksgiving weekend. She is a beautiful, calm little princess that I love dearly. We spent the days playing and giggling, and on Friday we drove down to the beach and put our little ones on amusement park rides.

Over this past weekend I really felt our differences. My niece napped, she didn’t bang her head and flail around for hours. She sat and ate her meals, while my son (6 months younger) screamed, threw things, and tried to run away.

My eight year old had multiple meltdowns due to the overstimulation of the holidays and extra people in the house.  Aspie Teen become Hyper-Aspie Teen because he was excited about having family over for the holidays, and had difficulty being appropriate in adult conversations.

My niece was happy and smiling riding the amusement park rides, while my little one screamed, climbed out and ran away. Then of course, he wanted Mom, who was riding and began screaming and shaking the gates around the rides to get to me.

Although I had a great weekend, it was incredibly exhausting, and at times very lonely even amidst a group of people. For the first time, I felt very acutely our family’s differences. Feeling the differences made me aware of the people around us, their scolding looks, and the comments like, “we would nip that right in the bud,” when our children had an eye-raising reaction to the stimuli around them.

             No—they would not, they could not, not if they lived in our family.

            When was the first time you FELT the differences? Do outings with friends or holiday gatherings with family make you feel it more?

Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.

4 Comments:

  1. Neither of my children are on the spectrum but I could tell how different other kids acted compared to my son because for one they seemed to be more behaved and be able to wait in long lines and my son couldn’t. I also can’t even take him out in public or else he gets whiny and acts up and throws tantrums when I say no and I get overwhelmed from it and I don’t see this from other parents. But we think our son may have ADHD and that is like autism because they overlap and they can also have sensory processing disorder, get over stimulated, and have dyspraxia and they can very well appear to be on the spectrum even though they’re not. But I couldn’t tell if my son actually had something “wrong” with him or if it was just me not knowing how to be a parent because of a personality he has and he is maybe just more active and my mom said my husband and I don’t go out often so our son never got used to waiting in long lines and my husband said we didn’t go out often enough to he hasn’t learned how to act yet in public. Now that he is in school, we could see he does indeed have problems and needed extra help. But he has gotten a lot better. But it’s still easy to wonder if you are still to blame like if their behavior is learned or not or because of your parenting or if you did this or that like did you not interact with them enough, did you not take them out enough, did you not take them to enough play groups, etc. I think any parent may relate to what you wrote if their kid is different than other kids. I always felt since he was about two that my kid is different than other kids his age but of course my husband would tell me he is just active and say it’s all normal behavior and I would tell him “But I don’t see other two and three year olds acting like him” and he would tell me I was maybe catching them at their best moments and our son is just active and I wouldn’t see those kids out in public so of course it will seem like all the other toddlers can be calm and wait in long lines and be good in stores and not get bored and impatient. I thought he had a good point then. I have seen how my nephew acts and I see a huge difference. But of course it was blamed on our parenting by my mother about our son like we don’t eat at the table, we don’t take him out enough, he watches too much TV, we let him do the same things over and over. So I brushed off the issues and didn’t take him to get tested for his development until his pediatrician requested it. He had some delays but they said he isn’t on the spectrum. But of course it was still blamed on us. Then we sent him to school and his language improved a lot which was why we sent him in the first place so he can learn language and learn social skills and learn to interact with other kids. Now we are going to be taking him to get professionally evaluated because he will be going into kindergarten. Who knows, maybe in the next few years he won’t need an IEP anymore because he has improved a lot in the last two years after he started school.

    I noticed I had rambled so to get with your questions, I have felt different with our son when we would take him out and when we would go to a friend’s house on my husband’s side. I always feel the stress and the anxiety and I never want to take him out because of the way he acts and then the worries about what other people are thinking because I can’t control my child and I have left places with him having a tantrums and due to him not listening because I was feeling overwhelmed by it and I never want to take him out alone. With friends and family, I don’t feel it as much because they are non judgmental and my son loves being at his grandparents and has fun there. It’s when he gets bored is when the real troubles began. To him boredom is hell and torture. He also gets over stimulated from all the noise and too many people so he has troubles then too.

    I would say the first time I felt different with our son was when he was around two and I thought then I just had to be a better parent and it was just his personality.

    • You are soooo not alone! Why is it that parents, even our own, are the MOST judgemental of other parents? We need to be kinder to each other, ya know. It is hard enough, whether are children are different or not, to parent, and so much guilt and condemnation is loaded on top of us too. As a mom, I feel it, and internalize it even if I KNOW BETTER. It hurts when people look at you as if you can’t control your child, and yet they have no idea what you are going through.

      I hope that you do get some answers from a formal examination, although sometimes the so-called professionals, are the worst people to evaluate your child. YOU ARE THE BEST person to do so, you know your children the best. As far as developmental delays, and IEP–IEP’s can be a god-send, and at the same time a complete pain in the you know what, but don’t be afraid to stick up for yourself and tell them what you want for your child! And oh those delays, I try to stress so often, that most times, they are just that DELAYS. Who made up this ridiculous notion that all of us must develop in one way, look like each other, and develop on the same time table anyway? My 5 year old (Tantrum Tot) had many delays, speech being a big ones, and now the child NEVER STOPS TALKING! And I mean…NEVER.

      My 11 year old sounds a lot like your son here, boredom is the enemy or all of us! If he is bored, he cannot stay still, bounces all over the places, climbs walls, and annoys the heck out of his brother. And the kids gets bored near immediately after NOT being bored! Keeping him busy is exhausting!

      I do truly believe that ADHD may be somewhere on the spectrum, or just outside the “guidelines” because there are so many overlapping issues. Executive function is a deficits (not sure I like that word) differences, are a cornerstone of an ADHD diagnosis, and a huge factor in autism (overlap or related?). Additionally, sensitives come into play often with ADHD, which again makes my eyebrows raise wondering if it is a related-form nearing the spectrum. My first diagnosis, on my way to really understanding myself was Adult ADD, but it didn’t explain everything. However, there was enough of an overlap in symptomology that a doctor not looking for autism was able to immediately pick-out. Food for thought anyway.

  2. My experience like that happened about 5 or 6 years ago when my kids were still toddlers, however, I took the blame and assumed that my parenting skills were the problem. I still felt this foreboding as I watched my nieces who I had been around when they were my kids age and did not have the same behaviors. I felt confused as I watched my nephew who was the same age as one of my boys at that time.

    It really struck me when we moved back here several months ago. I was used to being isolated and limited with family interactions. The family interactions we had were with my mom who is an Aspie as well. So… it felt comfortable nothing like my dad’s side of the family.

    The first time I went over to my aunts house when we got here, several other family members were there, I felt it a way I had not before. I finally, realized it for the first time.

    I felt so alienated, misunderstood, and as if I needed to defend both my behavior and my kids. It was awful, I went home cried, had a meltdown of my own, and then went into panic attacks for a week. It has become even more real now that I have my diagnosis. I am trying to process all of it in a healthy way.

    It has been a very hard transition of reality for me. I do think it will get better though, once I feel more comfortable and confident in myself. Maybe you feel that way too??

    • Hi Angel,

      I most certain do feel the same way. Trying to justify and explain my behavior, and the kids…makes me want to socialize even less than I already do.

      I desparately want to move back home, closer to my family (they live 600 miles away), but at the same time, I know that if we ever do the transition will be very difficult. I will be around more people, more often, and that exposes us. If that makes any sense?

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