The Forgotten Side of Autism
So Far I have managed to stay away from controversy and I have not yet been besieged by blistering commentary but I feel that those days have ended and maybe for good reason.
When Daniel was diagnosed autistic in 1998 at the age of 2-1/2 years old he would have been considered moderate to higher functioning on the autism spectrum. With the diagnoses being widened in recent years he is considered moderate to severe only because of the increase in higher functioning individuals being diagnosed.
What I fear in the wider reaching criteria is that those on the low end of the spectrum are being forgotten. Kind of like a sub-set of individuals who have become invisible to the media and thus the general population because their condition is not accompanied with extraordinary savant ability or a heart warming story of triumph.
I personally know a lovely woman named Linda who’s son Luke is in that category. He is 12 years old, non-verbal, self-injurious and not toilet trained. There are days at school he descends the steps to greet his mom completely red faced from the repeated blows he inflicts upon himself or tears streaming down his face for what will be another guessing game for his mother of “why” and/or “what” is bothering Luke today?”. Linda has spent entire weeks without sleep when Luke was having an especially hard time and as worn out as she is, she continues to drop her son off at school after driving in traffic for 20 miles and she picks him up at the end of the day because the bus ride would be too daunting for her lovely son.
I know we all have our struggles and personal difficulties in trying to get through each day and in our moments of adversity we are not likely to think of someone like Luke or Linda, but maybe in our quieter moments when we see our son or daughter playing appropriately with a peer or we hear the sweet sound of our child’s voice, we may pause and send a prayer up for Luke and Linda and those like them who hope against all odds that they too may some day experience such joy.
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@lightestballetgirl@xanga – Oh my, you have really touched my heart. There is no doubt in my mind that Linda will be touched by your post and therefor her uplifted spirit will touch Luke as well. Thank you, thank you from the bottom of my heart.
I was wary after reading your first paragraph, fearing another attack from the anti-autism crowd.
Instead I was presented with a simple, heartwrenching reminder of those who ARE still in dire need of some form of “cure” or intervention, for whom autism is not at present a gift but a hardship and a divider of relationships.
Give my love to Luke and Linda as a sister of a high-functioning autistic, who longs for them to experience the joy we have in my brother. May we soon find a way to reach those who are trapped, alone, and so often unhappy.
@aspiemamma – So well said and I appreciate the good wishes for LInda and Luke and will pass them on. If I know Linda like I think I do the first thing she will do when she sees me is ask how I am doing and how is Danny doing. I can’t wait to share with her your kind words and tremendous support. Thank You & Many Blessings to You and Your Son.
I was just thinking the other day about how creating this spectrum of disorders has really watered down what some families are experiencing. My son has Asperger’s, and while we have many challenges, I don’t lie awake at night fearing for his future. He is quirky and absolutely lovely and I wouldn’t change a thing about him. We teach him and anyone who will listen that his brain processes things differently, and that it is not something to be embarrassed about, but rather something to explain so that people can have understanding.
My experiences in no way compare with what your friend and so many others deal with on a regular basis. I am aware of that and do my best to advocate for those families when ever I have the opportunity. My heart goes out to your friend and her son. May they both find their strength to go on each day in each other. And may they find non-traditional ways to communicate and have understanding for themselves and all those around them. I wish them the best of luck in their journey.
Awesome!! Thank you for that story:) I’m just guessing here but I would say the majority of these children and adults have receptive capabilities way beyond the expressive. An acknowledgement with a simple greeting and a smile may be all it takes to brighten the day of someone who otherwise has little or no communication. Good for you, Ben and his dedicated parents!!
I have a friend whose son is 15, has Autism and Down’s Syndrome. He can speak a little here and there that is understandable. It is very hard for her. Sleeplessness, all the hours of working with him. I think about her very much; I live in another city now. It’s so difficult. He’s very sweet because they work with him so much and because that’s his nature. Most of what he says is indecipherable, but one time when I had first known him, I said “It’s me, Ben, don’t you remember me?” Because he wasn’t looking at me. He looked at me, rolled his eyes and said “Of course, Jana”.
@mahein@xanga – @Yukihimekumiko@xanga – I am so touched, my eyes are filled with tears at this moment but they are not tears of dread or sorrow. They are tears of gratitude for the blessings I feel for having been touched by people like you all. I know that LInda & Luke will also be touched and grateful for your well wishes, thoughts & prayers.
Know this to be true, you are all in my prayers this very morning. Thank You!!!!!
This made me tear up at the end. It’s exactly as you said – we tend to forget the troubles that other people are going through when we face our own problems which seem bigger than the world at the time. There are so many people out there who have it worse….
Inspiring post… hope your sons are doing well ^ ^
I’ll be thinking of Luke and Linda also… they’re strong !
I can definetly relate. My little brother who we love like crazy is autistic, and no doubt it’s a struggle but we try to go through it as a family. I pray for him all the time and this week I shall pray for Luke and Linda. Thanks for the poste
@Duhiana@xanga – You are the Best!!! Thank You and God Bless You & Your Family!
I will pray. My brother is diagnosed with autism (i think i have mention this in one of your posts) and i know the difficulty my parents face in providing a better environment for him in this crazy world. But i will pray tonight .
Thank you for your considerate post. No doubt you have experienced some trouble with your brother being affected. I think the siblings so many times are the unsung heroes in all of this and I’m sure you have been a source of strength for your parents. I wish all the best to you and your family
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i have so much respect for you, and other mothers with autistic children. my older brother’s autism isn’t as bad as others; i believe he’s considered moderately autistic. but it’s still a struggle nonetheless, and it mut be hard for you.
@zebra_phone@xanga – Thank you SO Much for the Well Wishes and the Props!! 🙂
i look up to you for having someone who’s autistic in your family-it’s not so easy now is it? there’s always an unspoken need. hoping things go well and he keeps learning :]
@asylumelissa@xanga – Well said! I thank you for your comments and if I may, I will put yours at the top of what I hope will be a stack of encouraging messages. You are awesome!
I wish you, your son and husband well and hope and pray that all of our burdens be lightened this day. Thank You!!
Every day, we autism moms struggle with our children…in every way imagineable. We struggle trying to understand them, we struggle in our hearts, wanting them to succeed so desperately and putting a happy face on when they don’t quite make it, exclaiming brightly what a good job they did, struggle so deeply inside when they are having meltdowns or hurting themselves…sometimes I think I have the worst time with my son, and it is extremely humbling remembering there are other moms out there who have it far worse than I do. My thoughts go out to Luke and Linda and all the other moms who are struggling in the same boat I am, whether it be worse or better! Thank you for this eye-opener!
@dreadfully__yours@xanga – Thank you, that means a lot.
Wow, I’ll definitely say a prayer for them.
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This post bore out of my shame in myself for the brief pitty party I entertained. and after seeing this post on twitter. http://bit.ly/2m1uTR
It’s disturbing so procede with caution.
Sorry if it is offensive in any way.