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Autism Spectrum Analysis

By Emily Milner

Most of what I want to write about right now has to do with my older kids, but it’s my personal rule that I don’t write about them here, partly because I want to protect their privacy but mostly because I think they would be really mad to be blog fodder. I’ve also written and discarded a draft of a different post on how much I hate decorating my house for Christmas (I know, I’m a grinch, but it just makes me grouchy to be in charge of Making Things Look Good even in a seasonal capacity).

Which brings me to another topic I’ve been pondering lately: my seven year old. Seven is nearly too old to write about, but I want to anyway, because he was recently diagnosed as being on the autism spectrum and I’m really at a loss. The news did not come as a surprise, but I still have so many questions.

He is high functioning (do people within the spectrum community say that? is that a thing with them/us too? what is the correct way to refer to someone on the spectrum who can go to regular school and doesn’t need as many services? or maybe he does; I haven’t figured out yet what’s even available.). He’s also always been quirky, with a deep need to follow a structure and also have other people follow it. I’ve often had a hard time explaining my reasoning to him or understanding what he’s trying to tell me. When he’s fixated on a certain thing, he cannot be moved. And his first grade teacher told me that the way she figured him out was by treating him just like her little brother who has Asperger’s (do we still say Asperger’s even though it’s not used as a diagnostic term anymore?).

The psychologist also thinks he has alexithymia, which is the inability to put words around emotions. Physical sensations tell people with alexithymia what they’re feeling, instead of the other way around. So, for instance, instead of saying “I’m mad, therefore I’m kicking you,” it’s “I’m kicking you, therefore I must be mad.” She recommended a group social skills class (I have yet to find one for his age; I need to keep looking) and individual therapy because of the way he puts himself down constantly when he fails to read the cues that other people get.

I’ve read the amazing writing by Megan on tooursurvival.com, and other stories online, and I know I’m not in the same league as far as autism parenting goes. I’m on the fringes of the club, not the deep trenches. So many online resources and stories seem geared to those trenches, and heaven knows I do not begrudge anyone that kind of support.

I’m still trying to figure out answers for my own son, though: what does he need, my Monopoly and Harry Potter obsessed child, who talks too loudly and rambles when giving answers in Primary, unable to read the cues that he’s been speaking for way too long? How do I help him to relax when he’s obsessed with something that just.can’t.happen. right now? How do I get him to understand his own feelings, much less anyone else’s?

And what happens now? Do I tell him about what he has? How do I tell it to him? I see a diagnosis as a useful tool, something to help me figure out my enigmatic child and know what he needs to be successful. But the spectrum is just that: a wide range of people, and I don’t know where to locate my son. Or myself.

Do you have experience with parenting autistic kids? What advice and resources do you have for someone who’s on the fringes of the autism parenting club? Any favorite books? Favorite websites or Facebook groups? Thank you in advance.

And now I need to go decorate something. Seven year old is really, really bothered that it’s December 7 and our tree isn’t up yet.

About Emily Milner

(Poetry Board) graduated from BYU in Comparative Literature, but it was long enough ago that most of what she learned has leaked out. She would like to mention other hobbies or interests, but to be honest she spends most of her free time reading (although she does enjoy attempting yoga). She used to blog at hearingvoices.wordpress.com. For now, though, Segullah is her only blogging home, and it's a good one.

9 thoughts on “Autism Spectrum Analysis”

  1. Emily, I don't have a child with autism, but I know many who do. I am an early childhood ed. specialist and I teach several preschool children who have autism. My good friend and colleague has raised a son who has autism and he has attended general education classes throughout school. Let me see what resources I can find for you!

    Reply
  2. I have raised three sons w autism who encompass the true meaning of the word “spectrum”. I am also a BCBA (have you heard that acronym yet? Among the whole new lexicon of acronyms in the autism world?!) I would love to connect and give you ideas or a person to brainstorm with—it’s my favorite thing to do professionally and personally. Email me, FB stalk me or Google me! ( and to prove I’m legit you can look up my book on Amazon)?

    Reply
  3. Married to someone with Asperger's so I understand it from that point of view. This is a bit of a novel but I wish I had had some compass and help when I first found out about my hubby's Asperger's (we only got the diagnosis about 3.5 years ago.)

    I recently got into a discussion with a friend who is parenting a child with Asperger's who shared resources that his son (the one with Asperger's) has found and resonated with. (He's 16, so has a little more maturity in processing what he is dealing with, but perhaps something can help with some basic ideas and principles.)

    https://www.youtube.com/watch?v=p-b_F1fAy6A&feature=youtu.be&fbclid=IwAR3UT8gjlly1GHZfcFt7n2vQmPL_ntnnqwy_vAIrOpEJBCG83G3HHjm4ToM

    The home website associated with that video is here: https://www.aspergerexperts.com/

    My friend who is parenting the child with Asperger's (I know that this isn't the term used anymore, but I still use it because it feels more clear to me since Asperger's really is different from what I see others who deal with autism, even though obviously there are some Venn diagram similarities) says this theory (PolyVagal theory) has also been of interest to them as they have been sorting through this.

    https://books.google.com/books/about/Reframe_Your_Thinking_Around_Autism.html?id=Bm8NCgAAQBAJ&printsec=frontcover&source=kp_read_button&fbclid=IwAR0qldofC_Nj7GlVghYMzt0u3M6UlNoyr63gfGR16W8Lcp9ZaNxuU51JITc#v=onepage&q&f=false

    I believe that brain plasticity is a thing. I've watched my husband be able to make some changes. I wonder what more could happen if, as the video states, were to seek out more specific support. I also really wonder what his life could have been like had he had a diagnosis as a child and resources/support to help (or at least understanding about the fact that we all have different brains and learning about our own brains can help us have a better life). It's hard to feel "different" but not know why. I get the sense that was his experience growing up.

    There is a therapist in Utah County who specializes in autism. Her name is Karen Fairchild. ((801) 675-4846)

    Here is her bio: "I am dedicated to helping individuals and families find the peace and balance in life that we are all seeking. I have over 20 years experience working with individuals and families with Autism and other disabilities, including early intervention and behavioral strategies. I love to help parents and married couples rediscover themselves and their relationship. I love to help in the process of brainstorming effective parenting choices for "tricky" children of all ages. Typical challenges include stress, grief, anxiety, depression, self-worth, and self-acceptance. I also have experience helping with healing from trauma and abuse." (She has family members who deal with autism and for a while did a support group for spouses of those with Aspergers.)

    I also called ScenicView Academy [inpatient for adults with autism, but they GET autism] when we first got the diagnosis (only about 3.5 years ago), and got some recommendations for other therapists who specialize. The discussion I had with the program director (I'm pretty sure that is who I talked to…Jared Smart. See the admin staff here…may be a variety of people you could talk to who understand autism).

    I would definitely recommend a support group for you, too or other forms of support (coach, therapist, friend walking a similar path, etc.). The impact of living with someone with stuck brain syndrome stuff can sometimes be really hard. In the video, for example, he talks about listening without any response to someone who has Asperger's. But sometimes YOU will probably need to be heard so you have the wherewithal to be able to be there to listen and be patient with it all. It's not like loved ones of those with autism have unlimited emotional resources, and you can't be his brain for him. He has to learn how to understand and manage his brain. I don't know much, but I imagine it will be easier to help form a brain around such learning rather than to try to rewire a brain at age 50. 🙂 I get excited about that idea, anyway. I don't think we have to think about stuck brain syndromes as static states. There will likely always be the baseline structures that mean he'll have autism for his lifetime, but skills can be learned and awareness can be built and a sense of self-efficacy in that progress can be amazing. (My friend has done arts to help those with autism and it is a remarkable thing to see what trained people can do to bring out the gifts and humanity of those who sometimes feel on the fringes because social stuff is hard.)

    My friend loves this book, called _Hold Onto Your Kids._ I also read it. It is, hands down, the best book I have read on parenting, and I've read a lot of stuff about human development/behavior and parenting over the years. The author talks about how attachment parenting can sometimes help mediate some of the impacts of autism. It's not going to be a cure-all if you ask me, but I found it incredibly empowering to remember and have specific validation about the power of a parent's presence and love, and how to help foster a sense of attachment with other mentors and caregivers of your child. Don't use your child's personal progress as a measure for your parenting, just know that your parenting CAN, DOES, and WILL make a difference. (My husband worries a bit about this kind of idea set that could make parents feel guilty if they don't see the results they want, so hence the disclaimer. My kids deal with some stuck brain stuff like anxiety and my instinct is to detach from them but the book reinforces the power of ATtaching instead. It's helped me have a different mindset when we have those stuck-brain moments.

    p.s. While I was looking up the name of the director of ScenicView, I found the following, fwiw. I think sometimes just talking to someone who GETS this can help. This is where I started in talking to the director of ScenicView and he was able to help me see in just a short phone call how some of what I'd witnessed was just *normal* for Asperger's. Normal is not always easy, but understanding what can fall under the umbrella can help sometimes not have it all feel so personal. Because sometimes, at least in my experience, it can sure FEEL personal.

    http://utahautismacademy.com/

    One last note. My husband has talked about how neurodiversity is really important in our world, and my friend has discovered a similar sense of hope and excitement to see what his son's unique mix of everything –e.g., the strengths and the struggles of Asperger's — means he will contribute to the world. You clearly already have a good sense for the kinds of things your son is good at. Keep fostering his natural gifts, I would say. As I've observed my husband, when he's in his brain-smart element, he's more able to foster his social skills. I can't speak for him, but I can imagine that builds confidence when in other social settings he may feel uncomfy.

    There are a lot of resources out there, and I think we'll continue to see more. Seek as much info as you can and then seek some more, especially via people who GET IT either because they have it themselves and/or they specialize in helping those with autism (and their loved ones) thrive, or they have a loved one with autism. My one piece of advice is reiterate to be deliberate about support for you. Sometimes they can be more like primarily negative venting spaces rather than resource-rich and constructive support groups. There must be a space to sort through emotions when you need it, but being around those who just vent all the time can be draining. I had to quit a support group for that reason. FWIW.

    Feel free to reach out if you ever just want to talk. You got this, momma!

    Reply
  4. There's some pretty good books written by Tony Attwood, he's Australian, specialising in Aspergers. I'd begin with his Complete Guide to Asperger's Syndrome, which I found incredibly helpful dealing with my eldest. Also the publishers Jessica Kingsley seem to publish a lot of books on the subject, some of which I have read over the years. I'm in the UK though, I don't know how readily available they'd be in the US.

    Reply
  5. Back when ABA with one more B was a rock band, PANDAS were bears is a zoo and CHAD was simply my brother, my husband and I discovered we had girls on the spectrum. Our oldest was 12 at the time and we had been told it was ADD(there was that diagnosis back then). We missed out on early interventions simply because it was too early for even the word ASPERGER'S to be floating around. That being said, we made huge steps forward after neuropsychological testing that showed areas of sensory deficits. For our kids, any program that dealt with their sensory needs helped immensely. It was worth a trip to a pediatric geneticist to look at that portion. Two of our kids had psychosis from seizures so the neurologist was helpful there. One kid learned to drive after taking up swimming as the ability to use all limbs together in one activity was key. Another had tantrums quieted by equine therapy…though it was cheaper just to do horseback riding lessons so we did that and it still worked. By the time we got to kid 5 we decided to try drama classes. Much more fun than story boards. This has been a phenomenal and the only thing we have used. She still has comorbid ADD but we have been patient and she is now 14 and growing into her brain. I have heard good things about karate for boys. By the way I am an RN and my husband is a PA. We have to have scientific evidence to back up any therapies. Incidentally my husband and I are probably on the fringes of some spectrum disorder because we both discovered we read all the encyclopedias in our separate homes growing up, had intense interests and liked it when people followed rules. We grew up without therapies, had wheat had milk and even drank water from the hose. I am here lying next to this wonderful soul who has been my best friend for 35 years and thinking I wouldn't have our family AOW…any other way.

    Reply
  6. Jennifer B., I didn't know you were an early childhood ed specialist! That is so cool. I wish we had figured out earlier that my son had autism so we could have cued his teachers about it better, but it's been hard to put a finger on for me. I'd love any book recommendations you could find (December is crazy though, and I'm in it for the long haul, so there's no rush.).

    Alyson, wow! Thank you! I will be connecting with you. I had not heard of BCBAs yet. I've got a son with ADHD and I've done research and therapy as we've figured out how to help him, but autism is new territory for me. I will be in touch–thank you!

    Hedgehog, that's a great tip, thank you! I feel like I don't understand how my son thinks yet–I looked up that guide and it sounds like just what I need. It's really helpful for me to have personal recommendations.

    Nicole, thanks for sharing your story–it sounds hopeful and happy and I really appreciate that. I have actually thought about putting 7yo in drama classes before–I will look into it again. My ADHD son is in taekwondo and it's been fantastic for him, so we could go that route as well. Thank you!

    And thank you, Sherilyn!

    Thanks to everyone for your comments and encouragement. I really appreciate it.

    Reply
  7. Married to someone with Asperger's so I understand it from that point of view. This is a bit of a novel but I wish I had had some compass and help when I first found out about my hubby's Asperger's (we only got the diagnosis about 3.5 years ago.)

    I recently got into a discussion with a friend who is parenting a child with Asperger's who shared resources that his son (the one with Asperger's) has found and resonated with. (He's 16, so has a little more maturity in processing what he is dealing with, but perhaps something can help with some basic ideas and principles.)

    https://www.youtube.com/watch?v=p-b_F1fAy6A&feature=youtu.be&fbclid=IwAR3UT8gjlly1GHZfcFt7n2vQmPL_ntnnqwy_vAIrOpEJBCG83G3HHjm4ToM

    The home website associated with that video is here: https://www.aspergerexperts.com/

    My friend who is parenting the child with Asperger's says this theory (PolyVagal theory) has also been of interest to them as they have been sorting through this.

    https://books.google.com/books/about/Reframe_Your_Thinking_Around_Autism.html?id=Bm8NCgAAQBAJ&printsec=frontcover&source=kp_read_button&fbclid=IwAR0qldofC_Nj7GlVghYMzt0u3M6UlNoyr63gfGR16W8Lcp9ZaNxuU51JITc#v=onepage&q&f=false

    I believe that brain plasticity is a thing. I've watched my husband be able to make some changes. I wonder what more could happen if, as the video states, were to seek out more specific support. I also really wonder what his life could have been like had he had a diagnosis as a child and resources/support to help (or at least understanding about the fact that we all have different brains and learning about our own brains can help us have a better life). It's hard to feel "different" but not know why. I get the sense that was his experience growing up.

    There is a therapist in Utah County who specializes in autism. Her name is Karen Fairchild. ((801) 675-4846)

    Here is her bio: "I am dedicated to helping individuals and families find the peace and balance in life that we are all seeking. I have over 20 years experience working with individuals and families with Autism and other disabilities, including early intervention and behavioral strategies. I love to help parents and married couples rediscover themselves and their relationship. I love to help in the process of brainstorming effective parenting choices for "tricky" children of all ages. Typical challenges include stress, grief, anxiety, depression, self-worth, and self-acceptance. I also have experience helping with healing from trauma and abuse." (She has family members who deal with autism and for a while did a support group for spouses of those with Aspergers.)

    I also called ScenicView Academy [inpatient for adults with autism, but they GET autism] when we first got the diagnosis, and got some recommendations for other therapists who specialize. The discussion I had with the program director (I'm pretty sure that is who I talked to…Jared Smart. See the admin staff here…may be a variety of people you could talk to who understand autism). https://www.svacademy.org/adminstaff.html

    I would definitely recommend a support group for you, too or other forms of support (coach, therapist, friend(s) walking a similar path, etc.). The impact of living with someone with a brain that can get stuck can sometimes be really hard (I have OCD so I know what it feels like to have a brain that can get stuck, too). In the video I linked to above, for example, he talks about listening without any response, just listening. But sometimes YOU will probably need to be heard so you have the wherewithal to be able to be there to listen and be patient with it all. It's not like loved ones of those with autism have unlimited emotional resources, and you can't be his brain for him. He has to learn how to understand and manage his brain.

    I don't know much, but I imagine it will be easier to help form a brain around such learning rather than to try to rewire a brain at age 50. 🙂 I get excited about that idea, anyway. I don't think we have to think about "stuck brain syndromes" as static states. There will likely always be the baseline structures that mean he'll have autism for his lifetime, but skills can be learned and awareness can be built and a sense of self-efficacy in that progress can be amazing. (My friend has done arts to help those with autism and it is a remarkable thing to see what trained people can do to bring out the gifts and humanity of those who sometimes feel on the fringes because social stuff is hard for their brains.)

    My friend loves this book, called _Hold Onto Your Kids._ I also read it. It is, hands down, the best book I have read on parenting, and I've read a lot of stuff about human development/behavior and parenting over the years. The author talks about how attachment parenting can sometimes help mediate some of the impacts of autism. It's not going to be a cure-all if you ask me, but I found it incredibly empowering to remember and have specific validation about the power of a parent's presence and love, and how to help foster a sense of attachment with other mentors and caregivers of your child. Don't use your child's personal progress as a measure for your parenting, just know that your parenting CAN, DOES, and WILL make a difference. (My husband worries a bit about this kind of idea set that could make parents feel guilty if they don't see the results they want, so hence the disclaimer. My kids deal with some stuck brain stuff like anxiety and my instinct is to detach from them but the book reinforces the power of ATtaching instead. It's helped me have a different mindset when we have those stuck-brain moments.

    p.s. While I was looking up the name of the director of ScenicView, I found the following, fwiw. I think sometimes just talking to someone who GETS this can help. This is where I started in talking to the director of ScenicView and he was able to help me see in just a short phone call how some of what I'd witnessed was just *normal* for Asperger's. Normal is not always easy, but understanding what can fall under the umbrella can help sometimes not have it all feel so personal. Because sometimes, at least in my experience, it can sure FEEL personal.

    http://utahautismacademy.com/

    One last note. My husband has talked about how neurodiversity is really important in our world, and my friend has discovered a similar sense of hope and excitement to see what his son's unique mix of everything –e.g., the strengths and the struggles of Asperger's — means he will contribute to the world. You clearly already have a good sense for the kinds of things your son is good at. Keep fostering his natural gifts, I would say. As I've observed my husband, when he's in his brain-smart element, he's more able to foster his social skills. I can't speak for him, but I can imagine that builds confidence when in other social settings he may feel uncomfy.

    There are a lot of resources out there, and I think we'll continue to see more. Seek as much info as you can and then seek some more, especially via people who GET IT either because they have it themselves and/or they specialize in helping those with autism (and their loved ones) thrive, or they have a loved one with autism. My one piece of advice is reiterate to be deliberate about support for you. Sometimes they can be more like primarily negative venting spaces rather than resource-rich and constructive support groups. There must be a space to sort through emotions when you need it, but being around those who just vent all the time can be draining. I had to quit a support group for that reason. FWIW.

    Feel free to reach out if you ever just want to talk. You got this, momma! One day at a time.

    Reply
  8. I have a daughter that was diagnosed with Social Pragmatic Communication Disorder just over three years ago. Although not officially on the Spectrum, she has many similar characteristics to the higher functioning kids. I could write a short novel about what it’s like trying to navigate life with a child that can be so frustrating one minute, and so charming the next—and all the hopes, fears, excitement and anxiety I feel as her mother. I am by no means any kind of expert, and am constantly searching for more answers to my endless list of questions, but here are two things that keep me going that I feel compelled to share with you:

    1. Help your child KNOW himself, LOVE himself, and CONTROL himself. Good sound advice for all parents to follow, right? This is my favorite parenting pearl I received from my very wise mother.

    2. Michelle Garcia Winner. Look her up! She is a speech and language pathologist that has developed an amazing program called Social Thinking—geared specifically towards kids like ours. I felt like my heartfelt prayers had been answered when I discovered her work. Maybe some of yours can be as well!

    Best wishes to you and your family!

    Reply

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