April is Autism Awareness Month

I recently did a radio interview with John Tory on Talk 1010 on the subject of Autism. Malcolm was diagnosed when he was four and it’s been an interesting journey dealing with both the emotional and social aspects as well as the significant language implications. John asked me one question that’s kept me thinking. He wanted to know if I was using my celebrity to bring more awareness to this issue.

I responded that for most of my experiences dealing with autism in my own family and with friends I’ve just managed to cope… no time for more than that. I certainly admire people who are active in building awareness and shining the spotlight on issues. But I’ve never seen myself as an activist (except when it comes to the frickin’ credit score, which I see as so destructive). Nor have I seen myself as a celebrity.

But I am a mother who has had to cope. I’ve tracked some of my journey with Malcolm in a book I’ve been writing called A Mind Of My Own. Today I’m going to share the introduction. Depending on the responses (interest or no interest) I’ll continue to share what I’ve written on the subject.

I wrote this for Malcolm and for me: I needed to put it on paper because that helps me to process. And I wanted Malcolm – who is a visual learner – to see how I saw him and to help me see him the way he sees himself.

A Mind of My Own: Introduction

Imagine having a child who is different from all the other kids. He takes forever to start speaking and when he does, he does so in an odd, formal way, echoing what he’s heard, or memorizing great gobs of dialogue from videos or TV. He can read fluently, even the most complicated texts, but seems not to understand even the simplest words. He rarely starts conversations and when he does speak he repeats his own sentences over and over.

This child doesn’t deal well with change. He has an intense need to keep his routines. It’s Tuesday so he has to wear his red shirt or something awful will happen. Try to make him wear blue and the screaming will make your head ache. He has difficulty with transitions, so visits to the dentist, school outings and even trips to the grocery store can be triggers for fury. And he demonstrates ritualistic behaviour, always bathing at exactly the same time every day, always brushing his teeth at 7:35 a.m.

He’s very sensitive to sound and smell and bright lights and the feel of things. So sensitive, in fact, that it feels almost like pain. When he is upset, for any of a variety of reasons, he’ll rock, or he’ll spin, or he’ll chew his clothes or his hair or his hands.

While both his visual and auditory memory is strong, language is confusing. He doesn’t seem to be able to answer any of the “W” questions: “what,” “when,” “where,” “who,” and “why.” In fact, he may not even be able to ask a question; instead he makes a statement that ends in the upswing of a question’s cadence. He thinks in very literal terms and can’t cope with abstract concepts. And since he listens selectively, you may be tempted to have his hearing checked.

Welcome to the world of Asperger’s Syndrome. My son, Malcolm, has Asperger’s and I’ve been walking a long and very winding road with him for several years now. I’ve learned a lot. And one of the things that has become most obvious in that while we’ve learned a lot about the condition, there are still a bazillion people out there that haven’t got a clue about what Asperger’s is and how to cope. If I could only tell you what I know…

So here’s our story. It’s not a technical manual that explains diagnostics or the genetic background or the pathology (although I do try to decode some words you may run into). It’s what Malcolm and I have faced together, and what we’ve learned together. I’ve tried to pass on the hints I found most useful, and share both the frustrations and the joys so that as you take this very long and winding journey with your own sweet one, you’ll know you’re not alone.

I hope that you enjoy our stories and that you learn something from our trip. Good luck on yours.

57 Responses to “April is Autism Awareness Month”

  1. My youngest was tested in Gr 2 (he is now in Gr 6) and while he has some of the tendencies they decided he was gifted rather than autistic. And while that has been a relief in a way it has presented its own challenges too. My 17 year old daughter babysits a girl who is autistic to the degree you describe your Malcome to be. She’s a sweet girl but it’s a hard thing to cope with sometimes.
    Thank you for sharing and I would love to read your book if and when you publish it. Being a parent is never easy.

  2. I teach at a public elementary school where we have autistic students in the regular classroom as much as possible. Most are high-functioning when reading and/or working on mathematics, but like you describe, have difficulty communicating socially. Thank you for writing a parent’s view of her autistic child, please continue sharing your information about this. You are the greatest advocate your son can have.

  3. Our son is 19 years old and severly autistic…he will need total support all his life and is perpetually 4 years old…he is the light of our lives…he is always very happy (which is understandable as he lives like a king in our house..lol)…our biggest worry is when we get old and die and leave him behind…that’s the hardest thing to cope with…

    Over the years we have had HUGE challenges…the PICA was insanse for many years (PICA is when you eat things that are not edible…such as dirt, soap, shampoo, glass etc)…he only has a few words and cannot have a conversation…he can read but has not yet learned how to use reading and writing to communicate…I could go on and on but that would take up this entire blog space…lol…Autism is a huge challenge for the whole family especially for the child…strength and support are needed…and lots of it!

    Happy weekend everyone!

  4. You’re right Gail that many people don’t understand autism. The daycare had 7 cows because my son loves Tupperwear and carries an empty water bottle as a security blanket. He does not tolerate a change in routine well at all and he wouldn’t speak much or play with the other children. They told me he had autism and therefore The End. I had a few cows of my own and tried to explain it to them, educated childcare workers who should know better, that many children love routine, it’s predictability in an unpredictable world. He doesn’t play with the other children because he’s the youngest in the group by almost 2 years and he doesn’t need to speak much because he’s getting everything he wants. Believe me, he’s quite vocal at home. And who cares if he loves Tupperwear? I love paper (scrapbook). I’m glad that he has found something so simple that gives him so much joy. Johanna’s right, being a parent is never easy. Kudos to you, Alex and Malcolm.

  5. Gail,

    This is an excellent excerpt and I am glad somebody is bringing this into the light. While the research that has already been done is pointing in the right direction for treatment and therapeutic practices, I still feel more needs to be done to break the stigma that this condition brings.

    I’m studying Psychology and hope to work as an ABA Therapist in the next few months as my studies continue. I have several friends who work as therapists and they tell me that as difficult as it is sometimes to do that job, it’s one of the most rewarding things they can possibly imagine. Seeing the progress a child can make in a few short months is incredible, and I’m hoping to be able to be a part of this transformation myself soon enough.

    Thanks so much for writing this. Many people who are facing this don’t know how to cope, but having a good, solid support system is absolutely necessary for everybody to remain happy and hopeful.

  6. I assume you are watching with interest the show “Touch”? I think it is just so good – capturing that fragile relationship between parent and child, wanting so much for them. Gail, you never cease to amaze all of us – and I know that your blog, talking about your experiences with your son and daughter, your ability to share yourself, will have profound ripples in the world. Wishing you ever the best – your introduction was excellent.

  7. I am so happy you are sharing your story Gail. Kevin was diagnosed with Autism when he was 14. He also has Down Syndrome and a severe developmental delay, which delayed the diagnosis. But I knew something else was wrong. He would spin around in circles, always put his toy cars in a straight line, was completely non-verbal (except for babbling) and incontinent. He preferred to be by himself and had no social interest. He just turned 18 and is on a waiting list for permanent care because he is getting harder and harder for me to handle at home. He has become physically abusive towards me.
    I wondered why you started following me on Twitter. (I thought you were checking up on my “I have no money sense” (which I don’t) tweets) lol. But now I know why. Please share your story. The more awareness the better.

  8. My 4yo son was 3 when diagnosed and it’s been very challenging over that last 12 months as we learned how to help him. Life is a bit calmer now that we are able to handle things a bit better. I’m glad we did something early because he’s improving – slowly – and he’s learning more words each week. The help from his daycarers and teachers are an absolute save and blessing.

  9. Hi Gail,

    Your intro made me want to hear more about the journey you and Malcolm are undertaking. Thanks for sharing it – I’m glad you’re writing it and look forward to hearing more. Big hugs to you and your little guy 🙂

  10. Hi Gail,

    I really enjoyed reading the introduction to your book, and would be very interested in reading more. I don’t know a lot about Asperger’s Syndrome except what I’ve picked up from the media, so I think a parent’s perspective would be greatly enlightening.


  11. My son was diagnosed with Asperger’s at the age of 4 as well. That was 10 years ago and the world has changed so much in that time. Initially, I carried a file folder that I’d pass to every teacher and teaching assistant we came across, filled with reading material for them. “What’s it called again?”, they’d often ask. Now, the high school he will attend next year has a teacher whose sole job is to look after the kids on the spectrum. That’s fantastic progress!

    And although there are challenges, I find it helpful to look on the bright side. Gabriel’s room is always tidy (the same can not be said for his sisters). He’s always on time. And if you ever need to remember anything, tell it to a kid with Asperger’s, and then ask them to remind you later … as in “remind me to pick up a birthday card when we’re at the store” … works every time! And I count my blessings every time I hear about the kids who are severe … I can’t imagine the challenges.

    Gail, I hope you continue writing your story …

  12. Wow Gail, dealing with Malcolm’s challenges and then turning around and helping us with our money challenges, while running two shows, writing books plus everything else you do? and you managed to raise an incredible daughter as well. Where do you get your energy and where can I get some!! You’re an amazing woman with awesome kids – please share more of your journey with us as you can!

  13. You are such an inspiration in so many ways and sharing your story about Autism would help inspire so many people. Please do publish!

  14. Thank you so much for sharing that with us, Gail. I knew that your Malcolm had Autism, and I was wondering where on the ‘curve’ he fell. My best friend of more than 15 years is currently going through a divorce; her soon-to-be-ex-husband has Asperger’s Syndrome, as does their older daughter, who is now 6 years old. When she first started dating him, neither of us knew much about Asperger’s. He had never been diagnosed, but I could tell there was something a little ‘off’ about him. Throughout her marriage, his anger, what appeared to us as temper tantrums, and his resistance to change was annoying, to say the least. But after the kids started to arrive, the problems escalated. Nothing disrupts a routine more than a baby. In the past few years, he has escalated to being downright abusive toward her, mentally, physically and financially (not ‘allowing’ her to buy something she needs, while he goes out and spends the utility money on crap and then doesn’t pay the bills). It wasn’t until about 2 or 3 years ago that she finally realized that there was something not quite right here, and started the process of getting him tested. A little while later, the Asperger’s diagnosis came. She read every book about Asperger’s available, searched for information online, read message forums, and did everything in her power to make the marriage work. But when he started turning toward their daughters during a blind rage, she knew she had to end it.

    When her older daughter started exhibiting many of the same mannerisms and delays in fine and gross motor skills, there was no question, and her diagnosis came fairly quickly.

    I’ll admit I’m still learning about Asperger’s. I have to remind myself every time I see her not to be sarcastic with her older daughter, because she is so literal. I learn a bit more with each visit what Asperger’s entails and how to cope with it. My daughters, who are the same age as my friend’s girls, are learning about it right alongside me.

    It’s not easy for most people to wrap their heads around. I really hope you finish that book, because once it’s published, I’ll definitely buy two copies: One for myself, so I can learn even more, and one for my friend, so she can feel a little less alone.

  15. I’ve worked with a few kids who have autism, one of whom has Asperger’s. Thanks for sharing this. While there’s raised awareness that autism exists, I don’t think many people understand what it is and/or how it manifests itself. Increasing understanding should result in better programming and support for people who have autism.

  16. Gail, I will echo Sandy’s comments…WOW dealing with your son’s challenges and then helping others with their financial challenges plus everything else you do and you have also raised an incredible daughter. Where does your energy come from and where can we purchase it!! You’re an amazing woman – please share more of your life with Autism with us!

    I have a nephew which was diagnosed with Autism. He is now 16 and my brother and his wife have been coping. He has Asperger’s and because of bullying at school a few years ago, needed to be home schooled. I would love to read more of your story…please continue to educate us!

  17. avatar Corrina Mattison Says:
    April 13, 2012 at 9:16 am

    Thank you for sharing your story. My sister in law’s daughter has been recently diagnosed and I would like to share your story with her.

  18. Gail,
    Thank you for sharing a little about your private life. Although my two sons have not been diagnosed with Autism or Asperger’s, I do see little snippets of them in your descriptions of Malcolm.
    I think many folks could benefit from hearing about your life with Malcolm, regardless of if they have a child/friend/loved one dealing with the same issues or if they come into contact with someone who is dealing with them.

  19. I loved reading this. It was filled with love and concern and in spite of Malcom’s challenges, more of a connection between the two of you than a lot of people have ever experienced. What a beautiful gift you have given each other.
    I would love to read more. It takes courage to share something so personal with strangers. I am inspired by your strength.

  20. avatar psychsarah Says:
    April 13, 2012 at 9:44 am

    Fascinating intro! While I have an academic understanding of Asperger’s and autism from my studies, it’s always helpful to hear it from “the horse’s mouth” so to speak. I think your ability to write clearly and personably will be a boon to people trying to better understand this condition for their own children, friends, coworkers, etc. . I hope you continue with this book. Thank you for sharing the introduction with us.

  21. Excellent description. Please keep writing of your journey. Your clarity and forthright language will be of great benefit to help people understand what many are calling an epidemic of autism spectrum.

  22. Please keep posting on this subject Gail. You are helping a lot of people who just don’t know where to turn for understanding on this subject. I myself have an adopted son who is FAS as well as schizophrenic, and while it is not autism, it still has all the same challenges. I literally had to threaten to go to the media with what was happening locally with our doctors in order to get my son seen by a specialist. The local Dr. kept telling me it was just the FAS, but my son was 18 and we had already managed to work our way around all of the problems with FAS and found ways to cope. These were NEW symptoms and I knew there was something else going on. It was extremely frustrating to be told over and over again that you did not know anything and that the Dr.’s knew your child better than you did after 18 years of handling his disability. Now, after making my stand and getting the specialized help he needed, my son, at 28 is back to being his loving self, but it was a hellish 10 years while I fought with the medical community.

  23. Dear Gail,
    I’ve been reading your blog for several years now and watching TDDUP naturally. But I just had to add my voice to all the others and say how impressed I am with what you have shared about your dear son. Please keep writting, your clarity of thought and understanding of the issue has educated me and opened my eyes and heart to what other children and parents are living with. Thank You.

  24. Grandson (the wee man) is suffering from a low level Aspergers. He is five and 1/2 and just recently has started to act a little more like four than three which is a huge improvement. He is loving but a challenge for sure. Not yet toilet trained and at times irrational. I look forward to reading about your journey and learning more.

  25. avatar Melaniesd Says:
    April 13, 2012 at 10:24 am

    Thank you for sharing Gail and everyone who has posted responses.
    It is so helpful to those going through similar challenges, but also to those of us who seem to have *regular* kids. My son is 6. Five of us girls had boys with 6 months and we are always comparing notes so to speak, when it comes to the boys. Each child has their own set of challenges, one is ADHD, one is on the Autism spectrum but doing MUCH better with his social and verbal skills since starting school this year, one is very emotional, mine is very bright and articulate but struggles with reading. It’s hard as a parent when your child has struggles, no matter what they are.
    I appreciate sharing with each other so we can educate and help each other with the process.

  26. avatar Jesort415 Says:
    April 13, 2012 at 10:29 am

    I look forward to reading more from your book. The intro is already very appealing to me. My son was Dx w/PDD ( a form of autism) when he was 3 and thru early intervention in our state and now a school specializing in special needs kids he will enter Kindergarten in a mainstream (not special ed) class with an aide. It has been difficult to even get my own family to understand his behaviors (he laughed when my brother yelled at him not to touch something dangerous, he still chews his shirt and books, and toe walks and skin picks) so I am thrilled when more light is shown on the condition and the way it effects kids and families. My hubby was a special ed teacher (recently laid off with recent budget cuts) so it helps to have a “professional” to help me understand it too.

  27. Great information. In future blogs it would be great to explain the difference between Asperger’s and autism. I don’t think that is very well understood. Maybe you can also talk about the financial challenges of raising an autistic child.

  28. I would love to read more of your story. I do not have kids of my own but I have worked with kids of various (exceptional) needs. They are amazing and bring so much joy to life. Reading your introduction rekindles my own experience (eventhough I am not their mother) and helps us get a perspective of a mom who is also a human, a woman, and an inspiration to her society.

  29. @Sue,
    Recently I was told that in the new DSMV the term ‘aspergers’ will be gone and it will be referred to as mild autism. Presumably the dx of PDD-NOS will also disappear.

    I see you put ‘normal’ in inverted commas. Many in the asd community refer to ‘normal’ kids as nt – for neurotypical. Or, as we half-jokingly call them in our house, ‘the boring ones’!

    Gail, please continue writing your book.

  30. Thank you for sharing your story with us. I hope to read more on this blog
    and in your book. My ‘neurotypical’ daughter attends an integrated preschool
    with students on the autism spectrum. Watching the challenges that parents face (financial, emotional, physical) quickly made me realize that I have nothing to complain about and that the simple things are what matters (a message you often write about). Thank you for sharing your parenting and financial wisdom.

  31. avatar Christine Says:
    April 13, 2012 at 12:36 pm

    More more more!!

  32. You’ve touched my heart Gail.. I hope that you continue to share your story.

  33. avatar stamperitis Says:
    April 13, 2012 at 1:30 pm

    Must say an interesting read. I’ve long known about autism through my children’s school, a girl in our church and a friends son. Loved reading your first post on it.

  34. I’m quite curious now to read more. My children weren’t born with special needs or challenges but I always wondered as a parent if I could have coped emotionally with a child who needed ALL of my patience and strength…and then some. I’m not so sure I could have found it in myself to be perfectly honest. My hat is truly off to you Gail and to all those parents who every day rise to the challenge to give their children the life most of us take for granted.

  35. My daughter, now 28, was finally diagnosed at 17 with Autistic Spectrum Disorder. These last 25 years have been a rollercoaster, to say the least, from when we admitted at 2 years that she did indeed have some problems and then trying to pinpoint what exactly these problems were and how to deal with them, all the while dealing with her very strong, independent and controlling behaviors. There have definitely been experiences that were amazing that would never have happened if she had not been in our lives. There were also times when I was reduced to tears because I just did not inow how to cope with the behaviors anymore. She is now living very happily in a Supported Independent Living apartment setting and is out each day either at a volunteer job or a partime paying job. This journey certainly has been a learning-as-we-go one and I look forward to reading about you and Malcolm. Your intro certainly is a perfect overview of the issues of the Autistic spectrum.

  36. Keep writing about it!

  37. You’re such a great writer, Gail. I would love to read this book when it comes out!

  38. I work with children on the spectrum. Thank you for sharing your journey with us!

  39. @Gail, You May not feel that you are a celebrity, as that word carries so much fanfare, but you are someone who can and has made a positive difference in 1000s of lives, just by doing what you are passionate about. Helping people figure out finance.

    You are also passionate about your children (as I wish all parents were) and just by telling your story you are changing lives.

    @Gail, You are an activist my dear, you just haven’t bought the t-shirt yet!

  40. I have many friends with kids on the spectrum. I’d love to read about your experience. Please continue writing your story.

  41. My best friend linked your blog and I had to write to tell you that I thought your excerpt was spot on.
    Continue writing!!
    My oldest had a preliminary diagnosis of Aspergers when he was 4 – At the time we were in the midst of getting my middle son diagnosed – with Autism.
    The youngest we watched like a hawk – and I knew, long before he also got his official diagnosis of autism, at age 3.
    For 6 years we struggled with having 3 very different ASD kids – It’s been a crazy chaotic ride – They are different degrees of disability and different things set them off, It’s a miracle I haven’t gone insane by now, really.
    This past year, our oldest was re-assessed and found to have a severe Learning Disability. He had failed two ADOS tests, despite the school and SERT’s all telling me that he was ‘typical Aspergers’. He has all the quirks of an ASD but is diagnosed with a communication LD instead.
    What I have learned, is that autism comes in many flavours, and there is such a wide range, which makes it so misunderstood.
    Thank you for bringing awareness, from a mom that is already aware, every day, how hard it can be, but also how much joy they bring as well. Every victory, every success is that much sweeter when it has been so hard fought.
    When my youngest son graduated kindergarten, he was still non-verbal for the most part, and couldn’t name a single classmate – but you never saw a prouder mom than this one. They have made me a more patient mom.

  42. CBC’s Nature of things had a very interesting episode back in December about autism.

  43. these ad pop ups while I am trying to read the blog is soooo annoying!!…is there a way you can just go back to having the ads without them popping up all over the place????

  44. avatar Rosemary Says:
    April 14, 2012 at 9:34 am

    I really enjoyed your intro Gail. I can’t have kids but have worked with one who was autistic and we formed a bond. Most of the time he sat and painted or drew. Keep the book coming. It is important and therapudic to share.

  45. Gail
    Thank you for sharing your story and your life with us. I have a son with Downs who has autism and cetainly relate to your observations.
    Because of you I am finally getting my financial life in order- thank you for everything you have done and I will look forward to reading the rest of your book someday . Love from Wendy

  46. Thank you so much for writing this. My son, Alex, has autism and is 10. He was diagnosed at 3. We’ve made huge strides in the last year or so with him, but everything you wrote is so close to home, so true. Thank you for sharing it, and please continue to write.

  47. avatar Carolyn C Says:
    April 14, 2012 at 10:28 pm

    I heard your discussion with John Tory, sitting in my car in front of my bank, and found it fascinating. I would love to hear more about your journey with Malcolm. I started reading about autism 35 years ago, give or take a few years, with the book “Son Rise” and recently read “Cowboy and Wills”. I am fascinated by the ways in which children learn and, in my next life, will turn that into a career. Instead, I home educated my two neurotypical girls (so I know something about fighting the government for what you need), both of whom are graduating from university this year, one with her MA and one with her BScN. I am a student of dog training, with an eye to volunteering in some capacity in the near future with my dog. Service dogs are being trained to help autistic children and I would love to be involved in that program in some way at some point in the future. Please continue to educate us about autism by sharing your story!

  48. Gail,
    I truly hope you will continue to write about your experiences with your son. There is such a huge community affected by ASD and hearing about the experiences of others, although situations may be different, is always an opportunity to learn from someone else going through similar trials.
    My son was diagnosed with PDD-NOS almost three years ago and though their diagnosis is different, my son sounds a lot like your Malcolm. Recently we acquired an Autism Service Dog for our son and, while there is a huge learning curve, it has already made a huge difference in our trips to the store and out in public.
    Thanks so much for sharing!

  49. avatar Melaniesd Says:
    April 15, 2012 at 8:37 am

    Tess, thank you for giving me a technical term : )

  50. Love your blog Gail and read it every day. The fact that you bring up Asperger’s/ASD is wonderful- especially in light of the US rewriting the DSM so as to stick Asperger’s and PDD-NOS under the Autism umbrella- which is scaring many parents as many of our children could lose their diagnosis, which means no accessibility to paid programming and a turn to private care, which can costs thousands of dollars annually.

    Though our son has been diagnosed since he was 3, we are still on waiting lists for paid programming so have had to use private therapists (speech, occupational, physio, etc.) and of course our insurance only pays a percentage, if even that, which leaves us with HUGE medical bills (and we have one of the best insurances through my husband’s government job).

    I guess that ties back into your daily blogs on paying off debt and savings (which is at times impossible to do) and then your great blog on “Women’s Unique Challenges.”

    This is a HUGE challenge for many parents who have limited or no insurance, and then of course those who just don’t have enough hours in the day to work closely with their child. And this is what we need for our children. We need the extra paid care/therapy when they are young so they can reach their full potential. Of course they will still face many difficulties as they go through high school, university, work, etc.- but at least they have received the help early on so they can achieve some of these important milestones and then better cope with their difficulties (speech, SID, etc.)

    For us personally, it’s been tough, but we have been very lucky in that I’ve been able to stay home, open a daycare and work closely with my son. I’ve read frantically on anything that in any way relates to my son’s special needs, have gone to TONS of conferences/workshops to get up to date info, and have of course worked closely with the therapists who have been helping my son. I’ve even taken on children with special needs in my daycare so I can help them reach their potential, and of course learn from them and gather more experience.

    My son is now in a regular school system and is doing wonderfully. Of course there are still many daily challenges and he still has his therapists, but he’s had the opportunity to reach this important milestone in his life and as he grows, will reach many, many more.

    This all to say- We must spread the word and we must educate others about our children’s special needs and how important it is to get help for them as early as possible. They are our champions and I’ve felt privileged to work alongside these children who have toiled through some of the most formidable challenges. They have and will continue to form an important part of our society as those who see the world in its most unique forms.


  51. Bless you Gail, you an inspiration!

  52. Thank you for posting this! I work with children who have autism (I do ABA therapy) and I’m always interested in hearing their stories from the parent’s perspective.

  53. Hi Gail, Thanks so much for sharing your introduction. Although I have not been touched by autism personally, I have always felt a keen connection to Temple Grandin and her life story. Most recently, I’ve been fascinated by the revelations in Carly’s Voice. I can’t wait to read your book!

  54. Gail: Your intro was touching and I truly don’t know how you do it all – you are an inspiration. I hope you continue writing the book as I would love to read it when published. Your Malcolm sounds lovely and I’m sure your story will help educate and provide support to many families.

  55. Hello Gail,
    My son was diagnosed with Sensory Processing Disorder when he was 3 (he’ll turn 5 soon). I mention this because many children with autism also have Sensory Processing Disorder. It’s a complex neurological disorder, but often includes extreme sensitivity (or undersensitivity) to sounds, touch, light, etc, as well as motor planning issues, among other things. My son has worked with an occupational therapist (OT) specifically trained to treat SPD, and his sensitivities are greatly decreased. His world is far less overwhelming now. He’s made great strides socially, emotionally, and academically. You might want to research SPD to see if you think he could benefit from treatment.
    Another thing: Have you read Temple Grandin’s “Thinking in Pictures”? As you might know, she’s a Ph.D. with autism, and I think it’s not an exaggeration to say she’s a genius. She’s incredibly articulate about what it’s like to be autistic, about how she experiences the world. It’s fascinating, and might give you some insight into your son’s mind and emotions.
    I hope this helps. I know how stressful it is to have a special needs kid.

  56. I was so surprised at the irony of this post to regards to my 4 year old son, Freddie. He is a 4 year-old with Asperger’s Syndrome and as you probably know has a certain fixation as a symptom of the syndrome. His particular fixation is personal finance and he loves, loves, LOVES your show! He talks far too much about budgeting and credit scores than your typical preschooler! So, I had a little chuckle while reading your blog today. Cheers.

  57. Hi Gail, thank you so much for sharing your stories and your truths about all the challenges you face with your son. My son, William (2 1/2 years old) has recently been diagnosed with autism. We are still waiting for the full diagnosis and testing to see where he is on the spectrum. Trouble is, he also has optic nerve hypoplasia (which stems from also having something called DeMorsiers Syndrome). So he has vision loss as well. Though he really is a wonderful little boy and generally happy, I find it so difficult day to day with him, in terms of entertaining, playing, outings, etc. I had worked in the childcare industry for years, and thought I knew it all…couldn’t wait for crafts and experiments to try. Well, let me tell you…they are few and far between, he is not very easily amused by anything…other than the ipad of course. Super smart, brilliant, in fact and bright and loveable and friendly and social, which from what I understand is not normal with autism. We have a unique little boy, that is for sure. Our number one issue is sleep. I am 6 mths pregnant with our second (another boy…oh Lord), and Will’s sleep patterns are getting worse and worse. He has never been a good sleeper, ever. but it is definitely getting worse. He used to be easy to settle back down. He sometimes wakes up and stays up for 3 hours at a time through the night, not settling until I sleep with him. We’ve tried it all, including crying it out. I tried to put an air mattress on top of him two nights in a row. Nope. He doesn’t like any blankets on him, he’s a pretty sweaty little monkey. I’m beyond exhausted and don;t know what to do. The docs just make you feel like you’re complaining, like every other Mother. Anybody have any suggestions or reasons why he would be all of a sudden awake that long at night? It appears to be insomnia or something because he is so tired, you can see that, but just can’t sleep. I feel for him…and us. He goes to bed no problem, never fights it, sometimes even asking to go to bed. Tried melatonin…doesn;t appear to be helping him. Currently trying casein free and gluten free, though not too strict on the gluten part yet. His demeanor in the day seems better, unless its just a coincidence. He’s so all over the map that it is hard to tell what is working or not. Anyway, thanks Gail for telling it just like it is. I feel the same, just basically coping…one day at a time!

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