Home > Awareness > 20 Years of Autism: A Mother and Son Perspective

20 Years of Autism: A Mother and Son Perspective

This blog post is by Kerry Magro. recently started a new video blog called “My Autism My Voice,” where he discusses a variety of topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerry.magro@autismspeaks.org or through his Facebook page here.

On January 15th of this year I turned 24. To be honest this milestone really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. 2 weeks later I received an email from a parent in regards to helping her grandson who has PDD-NOS. Maybe more than any of the other emails I had received before, this question was very detailed asking for several questions regarding topics such as an early diagnosis, therapies, early childhood, how to approach the diagnosis, etc. Even though I’ve helped answer questions before I asked my mom to help assist me in answering her questions.

What I would receive back from my mom was something I didn’t even realize and that was it had been 20 years since I was first diagnosed at 4. 20 years of autism. It made me realize how much time had actually flew by and of how I got to where I am today. I thought about the milestones I’ve  hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book, and maybe most importantly…having a voice to be heard. Time slowed down for a bit.

My Mom Wrote to The Woman:

“Looking at Kerry today I wish 20 years ago someone had offered me inspiration and hope that he represents and I can see why anyone would ask the question of how he got to where he is today. His PDD-NOS was severe. Although we did not know what PDD NOS was they mentioned that some children were institutionalized and that’s all I heard.
Kerry was our delightful only child reaching most development (height, weight) milestones except speech until he was 2.5 years old. At 2.5 he started to show extreme signs of sensory integration dysfunction where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues. There was a time when we could not bathe him – uneven surfaces such as sand and or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different pre schools because they couldn’t handle him the later he preferred isolation would not play or participate with other children and had delayed speech, limited pretend play, echophilia, twirling, extreme difficulty with transitions and tantrums. He had fine and gross motor delays. When I dropped him in the morning he would scream he didn’t want to go in and when I picked him up in the afternoon I would have to drag him screaming because he didn’t want to leave. Once home with a caregiver he would scream at the top of the stairs “Go away”.
Kerry was diagnosed first by Hackensack Hospital and then by Doctor Margaret Hertzig, The Director of Pediatric Psychiatry at Cornell. Doctor Hertzig is a world-renowned expert in Autistic and Autism Spectrum Disorders. She saw him as he grew marking improvement she saw. Interestingly to us she reconfirmed Kerry’s diagnosis last year for his accommodations for GRE’s as he started graduate school.
The Kerry you see today is not the Kerry I grew up with.
As to care Kerry did not come together for many years when he was diagnosed. Finally we tried to get him into a pre school handicapped class. There was a delay in that so we began Occupational therapy (OT) at home with a Pediatric OT working on the SID issues as well as speech. OT continued at home till he was 7 as well as in school where he was in a multi-handicapped class receiving speech, and OT. At 7 he began intensive physical, OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local PT.
One of the major things that worked for us was sports. Although he did not want to be around people I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes and the forced transitions helped condition him a lot. The vestibular planning therapy also help a lot.
Kerry started to respond to recognition, praise, rewards and I ran with that, we have a million great job stickers; magnets, trophies and I developed my own token economy barter system with him. If he would try something three times he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he did not want to do something I would agree to let him drop it. Since he wanted to do nothing three times sometimes seemed interminable for both of us but I kept to it and found a kid who loves bowling, played soccer, basketball etc. T- ball was rougher with the co-ordination issues and was one that got dropped but not till the third season.
All this time, speech, physical and occupational therapies continued, we also took lessons piano at the house to help him out.”

To have this written out for me to read left me with so many emotions. Some of the stuff was so long ago I had no recollection of it whatsoever. What stayed with me though was the passion and the love that came with this letter. No matter how many struggles were presented, my parents were always willing to go the extra step to help me and today I want to live by that example to help others.

My parents are strong. They are saints. Without them I have no idea where I am 5 years down the line let alone 20. I know I still have a long way to go but one thing I know is for the next 20 years that I have autism I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future. Please join me by having your perspectives of autism, both for you and your family heard in the comments section below. Thank you.


  1. Michelle Martin
    March 5, 2012 at 3:40 pm

    thank you Kerry for sharing this, I am a mother of a 3 year old that is on the spectrum, with hearing loss. It is a struggle and a complete joy to raise him. I try to find out all I can to help him. You are blessed to have a wonderful mama!! thanks mama too for sharing!

  2. pam cahill
    March 5, 2012 at 6:05 pm

    What a wonderful young man you turned out to be Kerry.you must inspire. So many kids and there moms and dads.your mom and dad truly did a remarkable job with you. You should be very proud of yourself.

  3. March 5, 2012 at 7:32 pm

    This was a beautiful post, and Kerry is a wonderful voice for the Austistic community. I will be following his video blog. I wish he could visit Austin, Texas so he could inspire the members of my nonprofit!

    • March 6, 2012 at 4:22 pm

      I’m pretty sure Austin is home to Tito Rajarshi Mukhopadhyay. He is an Author of quite a few books, the first when he was twelve. He has Autism and is unable to speak, but able to communicate. One of his books is entitled “How can I talk if My Lips Dion’t Move?” Please read his books for an insight to the mind of an Autistic. I gave a copy to my grandson’s para back in preschool and she was so happy for the insight. He may be the inspiration your nonprofit is looking for. Keep up the great work!!!!

  4. robin
    March 6, 2012 at 9:53 am

    I know a lady who has a child that has autism and she is the greatest mother in the world, her husband is awesome too. Keep up the good work Amy and Glenn

  5. lydia martell
    March 6, 2012 at 9:59 am

    I congratulate you and your mom in never giving up on what you can and can’t learn.Ihave a grand and he’s 6 and he loves bowling too.So thumbs up to you, when you pick the choice of your car, let her be a doosy.

  6. Joy Lawson
    March 6, 2012 at 9:59 am

    This is very relieving on my part. As i was reading the mom’s letter, as if I am telling my own story. We have similar experiences. My son, who just turned 7 last Jan, 19 was also diagnosed within the Spectrum of Autism.

    Thank you for sharing this. You keep up the good work.

  7. Liana
    March 6, 2012 at 9:59 am

    Thank you so much for this post. It gives me hope that one day my daughter will be able to communicate with me like this. It’s very difficult as a parent sometimes when everyone looks at your child with pity in their eyes and sometimes it’s REALLY hard to keep keeping on. Stories like this one revive and remind me that anything is possible if you believe.

  8. IRIS M.GONZALEZ CALAFF
    March 6, 2012 at 10:00 am

    GOD blessed you!Im from Pr and I have a son with autism too. he has 9 years and at this moment Im having a hard time witj him at school but he likes it and his teachers try to make the best for him.

  9. Heidi
    March 6, 2012 at 10:03 am

    Very inspiring Kerry! Thank you so much to you and your mother for sharing. I have a 3 yr. old boy that is my world and he’s just been diagnosed with PDD-NOS. Although he’s not severe, it’s been frustrating at times to understand and scary not knowing what the future holds for him. Thanks to people like you that are willing to share your stories parents with a newly diagnosed child can have some hope for a bright future for their children. I will be following your blog as well. :)

  10. Corrin Munoz
    March 6, 2012 at 10:04 am

    I want to be this kind of parent to my children. Thank you for sharing your stories. You and your parents are all Amazing!!!

  11. Robin Beaudry
    March 6, 2012 at 10:07 am

    Kerry and mom thanks for sharing it was so inspiring. My 9 yr. old son is on the spectrum and has his likes and dislikes, strengths, and weaknesses all of which we work on daily. My question is when and how were you told you were autistic? My husband and I are trying to figure out a way to tell him and explain it so he does not get upset over it. He tends to overact with health related situations and we fear he will think he is sick. Any suggestions would be very appreciated. Thank you!!

  12. tamatha
    March 6, 2012 at 10:11 am

    Inspiration and hope….thank you Kerry and Kerry’s Mom.

  13. Alice
    March 6, 2012 at 10:26 am

    Thank you so much for your story it has giving me so much hope. I am raising my 8yr. old grandson whom we adopted from 5mths. because his birth mother couldn’t deal with a different child. Reading your story reminds me so much of my little man his name is Hunter and he is doing very well with alot of help from all of his threapists and he goes to a regular school with us fighting the school system because they felt he needed to go to a Autistc school he is a grade A+ student in everything but scholizing we are working on this. But reading how well you have done Kerry I have hope my little man can go far. Thank you so much.

  14. minerva
    March 6, 2012 at 10:47 am

    Thanks for giving me hope that some day my daughter (Ashley)could live a normal life.

  15. teressa
    March 6, 2012 at 11:19 am

    Thank you Kerry for letting your voice and your words ring so true for autism. My son is 5 now and just beginning to find his voice. One day soon he can join you in spreading such positive and inspiring words regarding life with autism.
    Thank you for the boost of hope that is silently wished for by the parents caring for children affected by autism.

  16. Diane
    March 6, 2012 at 11:36 am

    I found this article to be inspirational and moving. Bless you both. I do have a question for you though and I hope you answer this. My 3 1/2 yr old son was just recently diagnosed with PDD-NOS. He has speech and fine motor delay. He has been going to OT and ST and is improving alot. He does two things that are disturbing to me that perhaps you may be of assistance to me with. First off, he runs and runs and runs some more. I will be holding his hand and all of a sudden he will let go and run. It is usually blocks before I can catch up to him. Did you feel the need to do that as well? Any suggestions on why he does this and how I can get him to stop? The other thing is that he gets so upset over the littlest of things and has severe melt downs. He does let me hug him, but other than that I do not know what to do and how to help him. Thank you for your time. Autism is not a curse. My son and you and every other disabled person is a blessing and you all are so very special. Blessyou and your mom.

  17. March 6, 2012 at 11:36 am

    Kerry, thank you so much for sharing your story. My 8 year old grandson is on the spectrum and is receiving bio-medical intervention and speech therapy. Both his doctor and his therapist have told us that he will grow up to have a full life. Your story just gave us even more encouragement. What a fine young man you are! God bless you and your family.

  18. Tanya
    March 6, 2012 at 11:52 am

    Thank you so much for sharing your story Kerry. It sounds like you have amazing parents who love you very much! I can’t wait to watch your video blog!!

  19. Thania
    March 6, 2012 at 12:18 pm

    I have an amazing 11 yr old on the spectrum, he has come so far from the boy who couldn’t look u in the eyes n hold a conversation to the star of his school all thanks to the wonderful teachers n OT’S he’s had. I see my son going far in life n with stories like yours I no in my heart it’s possible. Thank you for giving this mom hope for my sons future.

  20. Judy
    March 6, 2012 at 12:39 pm

    Truly inspirational! Thanks for sharing such a moving post!

  21. Angela Laster
    March 6, 2012 at 1:09 pm

    Thank You. My son Adian just turned 3 and was diagnosed with Autistic Disorder last year just before he turned 2. You give me so much hope and so much to look forward to. So again I thank u.

  22. sandra fullmer
    March 6, 2012 at 1:17 pm

    Thankyou for giving me hope! My 13 yr old with severe autism has been kicked out of his respite house because the school cant handle him, and there u go…no money. He used to say a few words , but now just pulls peoples hair and grabs their glasses(has broken several pair) Im afraid to take him anywhere. We live in a rural area, and are trying to get him into a special school in a larger city. We are bringing him home in the mean-time. Im very nervous about the whole ordeal…Thankyou for ur post

  23. Amber Weeks
    March 6, 2012 at 1:41 pm

    I loved hearing this from both perspectives! I have a 6 year old son who was diagnosed with autism at age 3. I’m a single mother & I have had to fight the system for 3 years to get him everything he needs. I was told he was autistic & “shoved” out the door. noone told me what therapies or doctors he needed. I’m still not sure. I go to autisim support groups & I do a lot of research on the internet. it is very inspiring to read your words, I hope one day he can communicate this well. my son is wonderful. his IQ is off the charts & his artistic talent is amazing, but I don’t know what he likes or dislikes or what he really wants. he’s been so angry lately & I don’t know why. he’s in a regular classroom at school & I believe they try to change him too much. I worry about how the teachers, students & bus drivers treat him because he can’t tell me. I just want him to be happy. I could go on & on, but I won’t. thank you both for sharing part of your story. it gives me some hope.

  24. March 6, 2012 at 1:55 pm

    My soon tobe 8 year old son was diagnosed with PDD NOS in kindergarten, he has matured quite a bit since then, and his public school has been awesome with helping anyway they can!!! He still has some meltdowns but they are getting fewer.I just talk to him and explain things in a way he can understand all the time.I know he has a bright future, Thank you for sharing your story!

  25. Dinora Leal
    March 6, 2012 at 2:07 pm

    Thank you Kerry, and Kerry’s mom…. My son is almost 12, and was diagnosed with autism when he was 3, we’ve come a long way…Your life inspires me to know that there is hope, I know that one day he will be able comunicate and express his feelings jusy as you do… I thank the Lord for your life Kerry, God bless you!

  26. The Squirrel
    March 6, 2012 at 2:53 pm

    My biggest fear for my 9-year old son with Asperger’s is that he will be lonely as an adult. TReading this has not only given ne ideas, but hope as well! Thank you for sharing and God bless.

  27. Wendy
    March 6, 2012 at 3:00 pm

    I have a son who is 7 he doesn’t like the loud noises and so on, but he is made progress also. He goes to OT and PT and he also has it at schooll plus his TSS is awesome with him. He is non-verble so we had taught him some sign language to help fustration level now his class is learning it also he is in K this year. The whole class is loving it and him and they r also learning.

  28. Sarah
    March 6, 2012 at 3:54 pm

    What a inspirational story! It is so great to hear how well you are doing, Kerry. Congratulations to your mom as well for raising such a well-rounded child. My daughter and I can very much relate to your story. She is six years old now and just recently diagnosed with PDD-NOS. Like you, she had normal development other than speech until around 2.5 years old. That is when the sensory problems became much more pronounced and we began to notice delays in other areas. We also went through three different pre-schools before finding one that really understood her and could handle her. She is doing well now and continues to make excellent progress with the help of PT, OT, ST and an awesome special education team. Reading about you and your mom’s success gives us hope for the future. Keep up the hard work and dedication!

  29. Francine Galassa
    March 6, 2012 at 5:14 pm

    This is inspiring! I am blessed to work with many students that are just like you. My goal is to make sure that everyone understands that every student is different and needs to be treated as such. Although we have our differences, we are all the same. We want and deserve respect! Thank both you and your mom for sharing with us that love goes a long way.

  30. Michelle harris
    March 6, 2012 at 5:22 pm

    Just reading your stories that’s fantastic where you are today my daughter has autism and she was sevevre but now with a lot of hard work she is high functioning and is in her first year of prep. I love your story and would like to stay in touch

  31. Lily
    March 6, 2012 at 5:41 pm

    Kerry,

    Reading your story makes me so happy to see how far you’ve come and how you and your family fought through so many turns over the years. We have a 5 year old son who was diagnosed with autism at about 2.5 years and it has been a heck of a journey for us all. He has taught us new ways of parenting and has enriched our life in unmeasurable ways. Thank you for sharing some of your life and heartwarming story with everyone. All the best to you and your wonderful family.

    Regards,
    Lily
    A proud mom of a child living with autism :)

  32. March 6, 2012 at 7:24 pm

    Thank you so much for sharing this. My son will be 10 soon and we got his diagnosis when he was 3. He’s severly autistic, going to OT, PT, speech, and is enrolled in special program for children with autsim. He still isn’t talking yet but I’m still hopeful. Yours is an inspiring story.

  33. Deborah
    March 6, 2012 at 7:46 pm

    Thank you, Kerry. I’m an autism paraprofessional who works with children who have been diagnosed with severe autism. I entered this field four years ago and fell in love; there is nothing better than watching a child unfold like a beautiful flower. Your story reminds me that we should never limit our expectations based on who a child is TODAY, because progress never stops as long as we keep working on it.

  34. sheryl
    March 6, 2012 at 8:09 pm

    Thank you Kerry for sharing this with us all. I am mother to an amazing and loveable little boy who is 4 and on the autism scale. We found out a little over a year ago. Although some days are really hard and some days are great. It is scary not knowing what his future can hold but hearing your story has given me just that much more hope for my son. You are truly blessed young man to have such great parents. I hope and pray that me and my husband can do the same for our son. Once again thank you! May god continue to bless you and your family!

  35. Liz Courselle
    March 7, 2012 at 3:00 am

    The word that comes to mind; heros, you and your Mom. Thank you for sharing!

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,051 other followers

%d bloggers like this: