By Lisa Ackerman
This past weekend, we had our 11th annual Real Help Now Conference in Costa Mesa, California (1.) It was a great event to educate and empower TACA families. I always love these events. My favorite part is always watching the parents as they leave; now ready to tackle their next steps to help their children.
In the question and answer period a dad, friend to my family, reminded me of the most important lesson in the autism journey: “Just because they don’t talk doesn’t mean they don’t have something to say”. This lesson deserves to be shared. It needs to be yelled from the mountain tops!
Just in case you have not heard it before, here is my story: My son Jeff was typically developing until 15 months of age. He had almost 20 words and had met all the milestones in the baby books. Then, it all literally changed overnight. He regressed, lost all his words, got very sick, and was diagnosed with autism. This was the most frightening time of my life; I could only imagine how my son felt.
My son was being sucked into the world of autism. He was self-stimulatory, had no way to communicate and everything was exasperated by a myriad of complex medical issues.
During those scary times, Jeff was absent from our world. He was lost somewhere else while sitting in the room with us. I did not know what he understood or thought. I certainly didn’t think he understood my words.
After years of therapeutic treatments and medical intervention unique to his needs, he has come back to us. He attends a typical education placement and is now a freshman in high school with a current GPA of 3.7! He still needs help in several areas, but we always raise the bar every year, and look forward to what he will be able to accomplish next. He has friends and has made enormous progress, but that is not the important lesson.
The lesson: During those tough times, Jeff was taking EVERYTHING IN. He heard what I said, he remembers the detail. He can now talk about the time “when he couldn’t talk.” He shares descriptions of, places and events that happened back then. His recall is impressive.
There are times when I have not been proud of my behavior and my words and wish I could take some things back. In my frustration, there were times I spoke about Jeff like he wasn’t in the room. He was. I now know he heard everything I said.. and understood.
This is a reminder to all parents of children with autism that lack communication skills: They do hear you and they do understand. They know what is happening, and as this dad reminded me, they are probably just are as scared as you are.
Please take this message to heart.
A few important tips:
- Talk to your kids with autism just like you would talk to any child, but keep it simple. Let them know where you are going, what you are doing and WHY you are doing it.
- Spend time with your child outside of therapy hugging them, telling them you love them and why you are fighting so hard. They will hear you.
- Please (and I am begging) do not talk about your kids while they are there in front of you. If you are at appointments (doctor or therapist) have a babysitter attend to your child in a separate room when you get to any details that may hurt their feelings. Don’t share negative emotions and thoughts with others when your child is present in the same room.
- Tell teachers and staff that work with your kids to do the same! Never talk negatively about any of the kids while they are there listening as well.
Individuals with autism can often have broken “outputs”. Their input system, in reference to what they hear, witness, and see is often intact. Usually what can be broken (and repaired) is their output system – their ability to communicate. Even with broken outputs, devices like the iPad can be hugely helpful in giving them a voice until they find their own (2.) This is one of many assistive technology solutions that can help individuals with autism find a way to communicate.
Your children are partners in the autism journey. Console them. Involve them. Share with them.
Thank you for reading this blog. Please share it with other parents. Our children are miracles. You must let them know you are working hard to help them be the best they can be. Always remind them of how much you love and believe in them. They can hear you.
References:
1) Real Help Now Conference www.realhelpnowconference.com
2) iPads and Autism – Innovation in Communication http://www.tacanow.org/news/ipads-and-autism-communication/
Moving Autism Forward by Team TACA 
How old was Jeff when he got his voice?
Jeff stopped talking at 15 months and started talking after 5. Conversations came at 7.
The oldest person at TACA we helped to get his words was 27. Don’t loose hope.
My son also lost his voice around 18 months but still has not regained this skill. He is 9.5 but I just moved him to a private school that is doing wonders with him so we’ll see. I’ll never lose hope(that’s the only thing that gets me out of bed besides my sons beautiful smile)!
Great story Lisa with such valuable lessons learned and that you continue to share with others. At 31 years old, my daughter is still trying to verbalize. I know she has so many thoughts and questions inside her and I will never stop listening and or sharing with others the information you provided here. I understand and relate to it so well. Hope is the strength and motivation we need.
Good reminder Lisa, thanks for this. It’s so easy to talk over the head of your child/teen/adult relative you know with autism. My daughter has ticked me off a few times, even though she is verbally delayed. Just because a person does not talk much does not make them mute.
Probably my favorite message you gave families at RHN. Something I did with my son and when he received his voice (iPad), we realized how much he understands.
I’d also add to use caution with media exposure. We tried to keep the TV off during the Sandy Hook shootings. When the choir sang America the Beautiful at the Super Bowl William stopped in his tracks, watched the whole thing and had tears streaming down his face. I asked him how he felt and he typed “I feel mad”. We are slowly getting my son back, but glimpses like these make all the therapy worth it and make me aware he understands most everything.
Michelle,
Your note is so important. William UNDERSTANDS so much. He has such a beautiful face and an equally beautiful heart. His has much to teach us in understanding. Thank you so much for sharing.
BIG Hugs,
Lisa
Thank you, Lisa!! Extremely well-said! Presume Competence in individuals with autism who are nonverbal. Their output might need “support” but their input is totally and completely intact!
Last year my wife and I took our four boys to the LA County fair. All the boys were playing with a service dog and having a great time. I got to talking to the trainer and found out that this dog was being trained for a child with autism. I was fascinated but during the course of our conversation the word autism came up a lot. It was then that I noticed my 6 year old son with autism stopped playing and looked sad. He looked like he was just told there was no such thing as Santa and hid behind my legs.
That night we went out to dinner and I asked him to come over to me. I said “Declan do you know you have autism”? What happened next broke my heart. He sat on my lap held my cheeks and looked me square in the eyes with his big beautiful blue eyes. He had tears running down his face and said “YES”. I cried and asked him a bunch of yes and no questions and got 100% responses each time. After that I reassured him that everything is going to be ok and that I love him very much. He then said “love you” and gave me a hug.
Leo – Declan is such an amazing kid. This note made me cry. They so understand everything. they know so much. My heart aches for the kids who cannot share their world with their beloved family. Just tell him you will keep fighting for him. He can do it.
With huge hugs, Lisa
Thank Lisa for the kind words and for TACA!
I love this article – we have yet to find a voice for my son’s David & Ricky but i have hope and i will do all that is in my power to always give them a voice.
Reblogged this on Puzzled Mommy and commented:
Reblogging from the TACA blog –
Please take this message to heart.
A few important tips:
Talk to your kids with autism just like you would talk to any child, but keep it simple. Let them know where you are going, what you are doing and WHY you are doing it.
Spend time with your child outside of therapy hugging them, telling them you love them and why you are fighting so hard. They will hear you.
Please (and I am begging) do not talk about your kids while they are there in front of you. If you are at appointments (doctor or therapist) have a babysitter attend to your child in a separate room when you get to any details that may hurt their feelings. Don’t share negative emotions and thoughts with others when your child is present in the same room.
Tell teachers and staff that work with your kids to do the same! Never talk negatively about any of the kids while they are there listening as well.
LISA – this is so important. Our kids do understand so much more than we realize. We have always treated autism like we would any medical condition. You wouldn’t not tell your kid he has diabetes and not explain why he has to eat differently and have daily insulin shots. The child needs to understand at his/her level. As Andrea became more aware and asked questions, we answered them clearly and matter-of-factly. Consequently as she got older, she began to tell us what therapies helped and what didn’t. Pulling her out of class for 1:1 work made her feel different and didn’t help. Bringing a recreational therapist into her 5th grade classroom and having the therapist lead the entire class in teambuilding games did help…and spilled over – other kids benefited and the classroom teacher got a bit of a break. In Middle School, she was able to tell me what she needed – social skills with girls. She would make a faux-pas and not know why and then they would shun her. PEERS at UCLA to the rescue. Now she’s finishing he Junior year in High School, She’s running for captain of the swim team – imagine that.
Our kids do know what they need. If they are resisting a therapy, we need to find out why. The last thing we need is a school OT telling a kid in class, and in earshot of other kids, you need to come with me because you need therapy. Transition to therapy in upper elementary grades needs to be done with compassion or done after school.
It’s been amazing watching our kids grow into themselves. Your Jeff is awesome, can’t wait to see what he will accomplish. Thank you for all you do.
Gina
Thank you for this reminder Lisa! I am on my way to pick up my Carson to take him to his Neurolgy appointment. Your right…..we need to talk about the positives & his success’s in front of him & not what will hurt him!!! Our babies already get enough of that elsewhere. We need to remember that they are smart little miracles that “hear it all”!!! Thanks for the reminder! I can’t wait to hug him….kiss his cheeks and tell him how much I love him & how proud I am of him….and….just how amazing he is!!! XOXO!!!
Camille
A couple of points to add to this great blog. Your child is your partner in therapy. Because, in the end it is their WILL POWER that enables them to pull themselves out of the darkness. They are scared and frustrated. It is our job to console and consult with them. To explain to them what is going on. To tell them in simple words what we expect of them. Give them (realistic) goals to work towards. Repeat the mantra “you and me are in this together and working together we will prevail”. This will give your child hope.
Thank you Lisa – I have said that what what feels like a million times over the years! My son has a beautiful voice and laugh however, he does not have ‘words’ but he communications to our family and the world beautifully! We need to remind ourselves that 80% of communication is non-verbal – and people need to stop the constant chatter and actively participate and listen sometimes. If you share a connection with someone – it’s usually not words, it is mostly on how they make you feel. When my son laughs and we are out in the community everyone stops what they are doing, looks at him and smiles – now, how is that for changing someones day? It is because his laugh is a true blue belly laugh which is so genuine – you cannot help but smile. I believe that kids and kids like him feel much deeper and harder than most people because they don’t have such tough filters that they have learned to build up over the years. I think that if the world would stop to look at kids like my son as the gift that he is and will continue to be for my family – they might learn something life changing. He has certainly changed me, my husband and my daughters lives in a very profound way – and I can say, it made us better and the best lesson – we stop and celebrate the little things in life and we listen with our hearts!
Wow. Ouch. How? …My main three thoughts. New to site, have enjoyed reading this publication, thank you Lisa. Not to mention the following heart warming and inspirational personal accounts. But I’m about to explode with questions. First, my son is almost 14-very severe-non-verbal-profound learning difficulties-highly obsessive/repetitive-capabilities comparable to a 2 year old-challenging(!!!!!!!)-capable of around 25 Makaton signs, but will only initiate a very modest amount, which are all his favourites; sweets, ice cream, noodles, chocolate. Has very personalised sounds for these same favourites, ‘puh’ is fairly universal though, and we consider the situation to what it is he wants. He can be affectionate and requests tickles often by saying ‘tee-tee.’
First, when you say nonverbal, it’s so rare I speak with anyone with a nonverbal child too, I always assumed this suggested low functioning/severe end of our rainbow.
Is this inaccurate?
What *were* these children/people capable of before speaking?
(My son has not a single game, toy, tv program that he enjoys. He pleats/folds scarves/tea towels/strings when inside, and outside he bounces on trampoline, climbs, but mostly shreds leaves and claps.)
~~~Were any of these verbally successful people similar to my own son?
I’m curious if my son has this inside of him, or if his diagnosed learning disabilities is what sets us apart. I don’t know where the learning disability stops and the autism begins, if you know what I mean.
My son is nearly a young man. He will need 24 hour support forever. He requires 2:1 support when out of controlled environments.
A few years ago my focus took a drastic change from always searching for that miracle cure or reason, to first digesting his condition, and what it will mean for the future, into what I need to do to help him learn and do the most basic of self care….for when the day comes I’m no longer around.
I became exhausted, hopeless, depressed, and plain Fed up of trying, wishing, and praying for anything more.
So besides my questions above, what *exactly* did you do with your children, and this adult man to encourage their voice?
Thank you again. —Chelsea
Hi Chelsea
I read your note. First things first: the window never closes. Please read: http://www.tacanow.org/family-resources/does-the-window-ever-close/
Second: get connected for help. Since 2005, more research on treatments for autism related issues has been done then all other years combined. Know that help is getting better.
I see you are from the UK. TACA is US but can refer you to resources in your area hit LIVE CHAT at http://www.tacanow.org to get connected.
All my best-
Lisa
Yes yes yes! I put huge emphasis in the early days with Connor that he was always spoken to respectfully while always assuming intelligence!!! I will never forget driving from Irvine back to San Diego after an HBOT session. I heard his little voice go ” Mom remember I used to feel so sick and I couldn’t talk? Thanks for making me better”…