Beautifully Different: Our Journey with Autism Spectrum Disorders (ASD)
A brief introduction- my name is Meagan. I have been married for eleven years and we have six beautiful children, four of which have some symptoms of Autism Spectrum Disorders (ASD), including two with Aspergers, three with Sensory Processing Disorder (SPD), and at least one with Speech Apraxia. Many children on the Autism Spectrum have co morbidities that are all pieces of the puzzle. On a good day, you would never know that they have these struggles. These children are high functioning and brilliant; they play well together and are very happy. On a bad day, which would consist of any kind of stress like a change in routine, illness, orpoor sleep, you may think, ”What in the world is wrong with these bratty children?!” I myself was a gifted and talented student as a child. In college I had the highest IQ on record (for that test at that particular time, surely someone else’s was higher!). I lined my toys up to play with them, I put my ear to the speaker to feel sound, I listened to my music loud, I was socially awkward (still am on a bad day!). I was very literal and rigid in my thinking (I was told I would debate the Pope himself if I thought I was right!) and have always spoken very frankly and loudly (to list a few of many things I have discovered about myself along my journey as a parent of Autistic children). I share that because in my situation, I believe with all my heart that, for us, this is genetic, that they got it from me, and I can point to my fantastic brilliant genetics as to where I got it as well. No environmental research needed in our situation, the source is glaringly obvious and I’m really okay with that.
In May of 2006, I gave birth to our third child. For the first two and a half years of his life there were some things that were just different, that were not at all like his older two siblings. I could not quite put my finger on it, but I started a conversation with our pediatrician that would go on for another year and a half. Each time we spoke, we would just talk about my observations and decide we would keep watching and see. In that time span some of the things we observed were: he already knew all of his letters and sounds, the same ones I was teaching his older siblings who were smart but not THAT smart, he had what is known as precocious speech meaning instead of saying simple phrases like “yes” or “no” he was saying things like “perhaps so” or “probably not”, everything he said was from a movie or book that he had read, he went from being very quiet and content to screaming about so many things especially at night, he could climb like Spiderman and would eat things you just should not like lint out of the dryer or trash, he would chew on his shirts and soak through them, he covered his ears a lot, he was a very picky eater, he would seek out pressure like wedging himself between me and my chair back, he absolutely could not cope with change in routine or transitions, he preferred to play alone, getting him to wear seasonally appropriate clothing was an issue, keeping socks and shoes on were impossible, he was (and still is) very clumsy and he would frequently put his hands over his ears. So many of these behaviors could be seen as normal behaviors when you isolate them but when you put them all together, there is a bigger picture of the problem.
Finally, we got our break through. I was potty training my son, which proved to be so much harder with him than the older two, and he had a horrid meltdown, putting his hands over his ears, shaking, putting his fist in his mouth, I mean this was very traumatic for him. I had a neighbor at the time that had a son with Autism. I approached her and asked her to come over and just observe him. She told me that she did not see in our son what she saw in her own son at all, who was a severely Autistic boy. She asked me what my concerns were and by the time I was done listing them all she knew without question that at the very least my son had Sensory Processing Disorder (SPD). She referred me to an occupational therapist and a book called “Out of Sync Child” to get me going in the right direction. I went back to my pediatrician with this information and we began to do a lot of research. The diagnosis process was a long road, at least six months to a year of visiting specialist after specialist. We saw a pediatric psychologist, speech pathologist, occupational therapist and finally a neurologist who gave the official diagnosis of Aspergers Syndrome with Sensory Processing Disorder and ADHD. His speech evaluation determined that he did not need speech therapy as his speech was ahead of the curve and his eye contact was okay at that time. His occupational therapy evaluation however showed many gross and fine motor skill deficiencies that I had not seen and so he was in therapy for three years. The occupational therapy was so amazing and his progress was unbelievable! Having a diagnosis helped us get him the tools he needed to function properly. As he has gotten older, he will be eight in May, his symptoms have in some ways become more obvious to me and I am so grateful that I got him early interventions. He currently loves to read, has lyrics and movie lines memorized, and has the upper body strength of an Olympian as he can climb ANYTHING (and usually does). He still chews his shirts on occasion no matter how many alternatives I give him and his social skills are typical of kids with Aspergers including poor eye contact, especially when he’s processing things. Academically, writing is the most challenging thing and I would imagine his IQ is through the roof though I have not had him tested and do not really intend to. Having so many siblings has given him the opportunity to form bonds and relationships in a safe place that he otherwise struggles with in friendships. He’s a beautiful soul.
My next child was born in December of 2007. My concerns with him were mild and if I had not known all I knew by then about SPD I may not have picked up on it. He had a mild speech delay and some sensory symptoms as well as some cognitive delays. He was in occupational therapy for two years and came through beautifully. He has struggled with some mild sleep issues but has no other diagnosis. Academically, he has taken the longest to learn to read and he is the most creative of the boys as well as being very athletic (which is amazing because before occupational therapy the boy could not throw or catch a ball).
In 2009 I gave birth to our fifth child. By this time there were checklists in place at each check up for us to be able to determine where he was at in his development (one instrument we used was the MCHAT). He had some gross motor delays with his milestones, but his biggest issue was speech. He was diagnosed with Speech Apraxia which is a processing disorder. This meant that he could understand us and wanted to respond but the words would not come out, so there was so much yelling and grunting and pointing in order to get his point across. He also showed signs of SPD as well as other Autistic behaviors like not transitioning well and limited interests. For the longest time his world only involved cars. He was obsessed with them, lined them up, only played with them, only watched the movie Cars and wanted to see it over and over…and over. Thank God for Cars 2! He was diagnosed early by the neurologist with Speech Apraxia and SPD, and more recently we are working on an Aspergers diagnosis which typically does not happen until around age seven. He has been talking for a year and a half now and he too has precocious speech and is brilliant, surpassing his older brother academically just by paying attention to things around him. His sleep is the worst of all of them, though it has improved over the years. His melt downs are intense and he rarely keeps his clothes on (hoping he outgrows this before college!). He still is not potty trained and has difficulty with transitions. He thrives on a schedule and prefers to stay home. He is awesome!
My youngest is only fifteen months. He has great things going for him like meeting developmental milestones and showing great social interaction. However he does not say anything and at one point was saying “Mama” but I do not hear it much anymore. We are watching him closely. His audiology screen was good indicating this is not a hearing issue so he will soonsee our speech pathologist for an evaluation. He is arguably the cutest of them all and is still sleeping well.
Because of our experiences we are vigilant about getting our children early intervention so that they can have the best possible outcome. We have many friends and family in our lives that we have walked through their journey of diagnosis and treatment with as well and it is such a gift to have that privilege. I encourage everyone I speak to that has concerns about their children to do the research, learn the signs, follow their guts and do not be afraid of a diagnosis as a label. A diagnosis means a ticket to therapy and a step closer in understanding what is going on with our children. As parents, we have the opportunity and duty to grow in relationship with them and be their advocates. As family and friends of people on the ASD journey, we have the opportunity and duty to see everyone as gift and to be compassionate, helpful and supportive. ASD children need love, support, and people who allow them to be where they are. Then again, isn’t that what everyone needs? Parenting ASD children can be such a lonely journey when the people around you do not understand what is going on and either do not know how to help or choose not to acknowledge that ASD is a real thing. Spouses and grandparents can take a long time to come around, especially in the diagnosis process. ASD awareness and acceptance is a beautiful gift to families on this amazing and trying journey, please consider giving it.