Home > In Their Own Words > In Their Own Words – Autism Remission?

In Their Own Words – Autism Remission?

This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism. Orfa’s writing can be read in English and in Spanish on her blogs.

I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.

So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?

Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.

So, if this analogy is right, does that make Frankie an autism survivor?

Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.

Then, why on Earth am I so shocked at what I heard today?
Perhaps I’m shocked because I never really expected to win the battle?
Perhaps because now I’m left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the autism community and we will have no identity left once we are out?

I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?

So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. Katie Wright
    June 28, 2010 at 10:49 am

    Dear Ofra,

    How wonderful! That is such thrilling news that Frankie has lost his diagnosis. He is a hard working little boy and you are an amazingly dedicated Mom.

    I think many parents suffer from a form of PTSD. The diagnosiscompletely traumatizing yet one must move immediately towards action-get on the waiting lists- learn about IEPs- spend a million hours on the internet because your pediatrician probably knows very little, etc…Having your child’s future hanging in the balance doesn’t give one much time to reflect.

    Whenever I hear a toddler really cry or tantrum I get horrible flashbacks to my son’s 2 years of non stop screaming. I cannot look at old pictures or home movies because it is too painful to re live those scenes of normalcy and see how much my son has lost. Ofra, even though your son is recovered you are probably still traumatized to a degree. I hope that fades in time and you are to able to enjoy your family without the constant spectre of autism hanging over your head. Allow yourself to feel proud of your accomplishment.

    I have been working constantly for 6 years to help my son and he is nowhere near recovered. The fact that you have recovered Frankie makes me hopeful. Big congratulations to Frankie’s team!

    Sincerely,
    Katie Wright

  2. June 28, 2010 at 12:58 pm

    While I’m sure it’s thrilling and confusing, we at Brain Balance Centers hope you take a moment to enjoy the view from where you are now. Kudos to you on being a tireless advocate for your child! Good luck in the future and may many more children make the strides your child has. Thank your for sharing your story.
    Sincerely,
    Brain Balance Centers
    Effective Education for Children with Mild to Moderate Autism

  3. Cecilia Kayiwa
    June 28, 2010 at 1:27 pm

    Hello Ofra,

    My 4 year old Nickolas received an early diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) at the age of two in November 2008. Last November, we were told that he was no longer autistic at Morristown Memorial Hospital, NJ. It’s the same hospital that gave us the diagnosis. You can call it remission as you stated. He got early intervention sessions, but at a later time b’se once he turned 3 on Jan 30, 2009 the early intervention ended. He was placed in an autistic Pre-k program with intensive ABA. In November 2009, he was transferred to the D.A.I.S.Y Pre-k program for kids with special needs. He has improved a lot socially and his speech has grown tremendously. At the end of November during the follow up appointment, we were given the same news. Since my oldest son who is 11 is on the spectrum too, I just couldn’t believe it. The neurologist suggested taking the label away, but I refused for now b’se it’s too good to be true. Despite the few moments when he stims/flaps when something excites him it’s very hard to observe any autistic characteristics/tendencies. I’m so happy to hear that another parent is going through the same situation that I’ve experienced. God is great!!! Best wishes and keep up the good work with your son!!!

    Sincerely,

    Cecilia Kayiwa

  4. Barbara Pons
    June 28, 2010 at 2:36 pm

    Congrats to you Ofra, Frankie and your family. You guys are amazing!!! I too have put countless hours and training for me into my son Jacob’s life. He was diagnoised with PDD-NOS at the age of 3. He has had another label as explosive disorder too. He is now 10. I have had him with DCF-Voluntary services, with creative interventions and numerous other programs. It also has been a long struggle for my family. My daughter at times feels left out. It is so hard. But i truly believe he is doing soo much better. It took many years and many PPT’s to get him into an appropriate school(Woodland School in East Hartford). I also believe this school has had a huge input into him as well. His self esteem came back. His behavior is awesome. This school is truly amazing!!! He is now doing very well. I can remember back a few years ago and we couldn’t get 1 minute to ourselves without him screaming at us. We can now go for hours at a time with out him wanting our attention. Things have really improved and his new school is doing wonders with him. He is learning to read, write, add/subtract and tell time. He learned a few months back how to tie his shoes. He is doing awesome. I am too hoping that someday he will no longer have the labels he has now. I think the only additional help will be for him to get more mature. I have taught him to listen to other peoples feelings/wishes and if someone is hurt to get help for them and make sure they are ok. This was huge!! But he is doing all these things i have taught him. I am hoping, praying and working hard with him and hopefully i will be in the place you are right now. Thanks for sharing!!! I too still have hope!!!

  5. Carol Oates
    June 28, 2010 at 3:06 pm

    I’m delighted for you, that has to be a better feeling than winning the lottery 50 times over. I’m a little confused myself because as a mother of a 14 year old boy who has shown great improvement, I had no idea this could happen. I find this post shocking to say the least, I’m totally bewildered by what I’ve just read and the fact in all the meetings I’ve attended over the years no one ever told me my son could be recovered. Having said that it’s amazing to know a little boy and his family can make such improvement. I’m sure you are giving so much hope to so many. It’s a lovely story, good luck for the future.

  6. June 28, 2010 at 6:40 pm

    I once thought that Aspergers wasn’t “curable” and that people like Jenny McCarthy were nuts for thinking their kid was cured…

    But I have to say in the past 18 months we’ve watched our son go from vacant to present, from tantrums to communicating, from alone to social and I say he is nearly undetectably on the spectrum.

    I agree it’s a shock to think that you’re going to live with a vacant autism diagnosis for life and then suddenly your kid shows up and delights you!

    We celebrate every day.

    Thanks for sharing your story.

    McNall
    http://www.maxnmestudio.com (if you want to read our story)

  7. kim griffiths
    June 28, 2010 at 7:09 pm

    a family member has aspergers,with genius IQ,but he only want to talk or do anything if he has cannabis or morphin,and then he is like a different person,it does not make him high or drugged up, just normal,the docs see it as a adiction but hes just self medicating, why cant they stop being so narrow minded and see that God created these drugs to help,and the fact sum one on the spectrum who needs it to get thru the day shud be able to get it on prescription!!!! crazy they will give meds out by the boat load thats no good,but wont listen wen we find sumit that works.find me on fb if u want to talk kim griffiths UK ENGLAND. PLZ EXCUSE rytin im vy tired

    • April 22, 2011 at 6:11 am

      Hey Kim,

      Thanks for this – I couldn’t find you on FB, come and find us and share you’re story please! We’re a pressure group fighting for safe access to cannabis for autistic people and we’d love to have you on board :)

  8. Heather Murguia
    June 28, 2010 at 9:43 pm

    what did you do so differently?

    • Orfa De Armas
      June 30, 2010 at 12:07 am

      Heather, I am not sure…we were very ignorant when we started and were overwhelmed by all the options for treatment – we decided to stick with intensive early intervention using the ABA method (30 hours per week) through the University of Washington Autism Center. We were part of the research program for two years, with no vacation and no breaks. That’s all I can say we have done and many people do the same with not such good results…Perhaps the fact that Frankie was not even 24 months when we started played a big role in his success, I am not sure but I am sure that there is hope, no matter what everyone else says.

  9. Sharon
    June 28, 2010 at 11:31 pm

    What a wonderful achievement. It gives hope to all that are touched with this condition. I have been challenged and rewarded by my 4yo son who has autism, challenged as a parent in ensuring he is well supported and has access to the therapies and resources to assist his needs and rewarded in seeing the progress that he is making. Your story gives me a great deal of hope that all things are possible. I can understand your mixed emotions in that something that was so much of a focus is no longer there but it is a great achievement for Frankie, yourself and all involved in his recovery. I wish you and your family the very best.

    Regards

    Sharon Dzodzadinov
    Melbourne, Australia

  10. Orfa De Armas
    June 29, 2010 at 2:47 am

    I did not expect my blog to be published by Autism Speaks and this is a very humbling experience for me. I appreciate all the positive comments my blog has received and I am glad that so many of you can relate to our story. I started blogging as a way to cope with our son’s diagnosis and in an effort to make myself focus on the positive and not the negative – that’s been our mission so far and we will continue to work hard promoting awareness and hope.

  11. stephanie
    June 29, 2010 at 11:47 am

    Some real good reading material

  12. Tina
    June 30, 2010 at 4:21 pm

    That is excellent and encouraging news. Would you be willing to share what he received for treatment etc.? I am Mom of a 2 year old who was recently diagnosed with PDD. Thanfully he was diagnosed at 22 months and we have been forging ahead ever since. I just like to hear what worked well from others as we observe his daily sessions.

    • Orfa De Armas
      June 30, 2010 at 7:38 pm

      Tina,
      We joined a study at the UW for intensive early intervention following the Early Start Denver Model. It uses the ABA system (applied behavioral analysis) for addressing problem areas in the child’s development. First we addressed basics, like pointing, waiving, joint attention, responding to names, etc, since our son was as young as yours; later on, we moved on to more elaborated things like taking turns, pretending, sequencing and so on. At this point, since he is four, I am working with a private therapist and introducing kindergarten stuff like days of the week, reading comprehension, questions and answers, good manners, friendship, etc..You will see, everything will work out great and all you have to do is tune in to the specific needs of your child and work at his speed. Many blessings!

    • Orfa De Armas
      June 30, 2010 at 7:39 pm

      Tina, Here is a link on the project we joined:

      http://www.autismspeaks.org/press/early_start_denver_model.php

      • Tina
        July 6, 2010 at 3:08 pm

        Thank you so much for responding. I feel we are on the same track with therapy and he is making tons of progress with pointing, pecs and responding to his name. Thank you for sharing. We are hoping in 2 years that we will be in your shoes. Thanks again!

  13. Kirk Bey
    July 3, 2010 at 11:18 pm

    Dear Orfa:

    What a remarkable story! Thank you for sharing it.

    My son is 4 1/2 and was diagnosed with ASD two years ago. We’re currently building up to 20 hours a week of therapy through BBA (Boundaries Beyond Autism); he received one hour a week of OT at one of the city hospitals; and he will start 4K in September. My wife and I have seen him make tremendous gains over the last few months, and we’re optimistic he can continue to do so if we stay proactive.

    I can only imagine your shock upon hearing about your son’s “remission.” To be honest, as happy as I would be if that ever happened to my son, I can’t even begin to imagine the shock I would feel. My wife and I don’t know “normal,” and it seems strange to be around neuro-typical 4 1/2 year olds because our son is for the most part nonverbal. However, I hope we can one day experience what you are experiencing right now.

    We both are optimistic our son will one day reach a point where he will be able to communicate effectively and contribute to society. Your story is heartwarming and gives me hope.

    God Bless.

    Sincerely,
    Kirk Bey

  14. Cat
    July 4, 2010 at 10:02 pm

    Hello Ofra, I am new to this.. all of this.. I am overwhelmed to say the least, but I am hopeful. It is typical, if you will, to read about boys being diagnosed on the spectrum, but I have a beautiful little girl who was diagnosed in Feb of 2010 at the age of 29 months. She was given the diagnosis of PDD-NOS. I am still in denial because deep inside, I feel that she can overcome this and when I read your post, I started to cry like a baby.. because I KNOW that it is possible.

    My daughter is the youngest of 3 girls, the older 2 are 11 and 8. They play with her constantly and I do think they have helped her tremendously. My little one is verbal, she always was but the thing that led the doctor to diagnose her is that her eye contact was not good and she did not respond to her name that well either. SHe is inconsistent, which can be both a good and bad thing. We started receiving services through early intervention, but it took a few weeks of complaining to the agency that I did not want Floortime therapy but that my doctor recommended up to 20 hours of combined speech, occupational and ABA therapy combined. So we are receiving 16 hours of in home therapy a week, 14 of these hours is ABA, which is fine for me right now because more than this I don’t think my daughter can handle. Since the middle of March, she has definitely progressed.. She never really has tantrums that last more than a minute and even those are phasing out. She knows all her colors, shapes, counts to 15, recognizes numbers up to 15, identifies probably half of the alphabet, she sings songs, she shows empathy…says hi and good bye when she sees someone coming and going..she has a vocabulary I think now of about 100 words…people can understand her speech, she asks for things..can wash her hands on her own..I can go on and on.. but still I am not sure if I am doing this right.

    There are things she needs to work on, such as she cannot pull up her pants or take them down.. dressing is very hard for her..choosing is hard for her and probably her biggest behavior issue is transitioning from one task to another while she is at school (she goes 2 x per week w/a shadow)..at home her transitions are fine. She also has had a touch of delayed echolalia…happened mostly with when she used to watch Sesame street. We have since stopped her from watching anymore than 1/2 of tv a day. Should I be increasing the hours of ABA? Should I increase OT? There is no one I am talking to b/c I don’t know anyone wants to open up about this. I do have wonderful therapists I am working with that have taught me so much already.

    Right now, my school district is evaluating her and I am gone to see a school in 2 nearby districts that utilize ABA therapy throughout the day and I DID NOT like either one. One had 3 non-verbal boys in the class with no opportunity for partial inclusion into the general ed classes, and the other school had several children with the same scenario and again, there are no peers to help her model after. I know that she would benefit from ABA so I have asked to school to consider placing her in their Pre-school disabled class that consists of children with Language Delays, no one with PDD. I am proposed that she also get 2 hours of ABA in the afternoon as well. They are currently considering it and they will get back to me. I strongly believe that my daughter needs social interaction with peers and not just a full day of ABA. Then again, I am relying on the professionals to help me out with this.

    I am glad I found this site.. until now I stayed away from the internet b/c I was getting myself very upset. I apologize for writing so much.. it is everything I have had bottled up inside me for so long.

    I am thankful to read about progresses and so happy for you and your family. Thank you for sharing this with the community.

    Cat

    • Orfa De Armas
      July 26, 2010 at 11:24 am

      Cat, you are doing so much already on your own and I commend you for paying attention to where your child is in her development and being so clear about her problem areas – being aware of her struggles is winning half the battle already. She will accomplish things at her own pace and you need to be tuned in to what method she responds better to. Have you tried social stories? They worked so well for Frankie and they continue to save my life once I hit a wall for a while and I can’t get around it. Her issues with dressing might not be motor skills related but a question of control and rigidity, same as having trouble with transitioning. That was the case for my son for a long time until he got better at negotiating, mainly with the aid of social stories… You are right about the importance of social interaction for your daughter, it’s not all about ABA. While you wait for the school district to get back with you, I would suggest that you take it upon yourself to plan playdates with NT (neurotypical) children you might know and supervise them, coaching your child through the right ways to interact with a playmate. Also, you might want to try a few hours at a regular preschool or co-op where more parent involvement is allowed and you might be able to monitor her social interaction closely. I have information on social stories and on planning playdates that I would be happy to send to you. You can contact me directly at orfadearmas@yahoo.com and provide me with your e-mail or physical address and I will be happy to share. Don’t apologize for venting, we all need it! and, although we are no experts in Autism, we are parents and “experts” in our own children – nobody knows your daughter better than you do! Good luck and stay in touch.

  15. Lisa
    July 16, 2010 at 1:09 pm

    Ofra,
    I’m so happy for your family. I too have began pinching myself that what was a long 3 years of therapies, doctors, diets, etc…has become a much more normal life of watching my son interact with other children, laughing, giving hugs and being a silly 8 year old who loves video games. Autism remission is TOTALLY possible! It’s a tough road, but like you said the rewards are so worth it. It makes you stronger and more patient in a way you never thought possible. My son is not 100% there, but to just see the difference 3 years has made is wonderful. To have therapists, friends and family notice and comment that he seems so different and more social is a huge reward. It makes me know my fight was worth every minute.

    Lisa

  16. Orfa De Armas
    July 26, 2010 at 11:09 am

    Kirk, Cat and Lisa, thank you for taking the time to comment on my posting. It means a lot to me to learn about your personal story and the hopes we share for our children. Many blessings!

  17. Brie
    September 15, 2011 at 1:27 am

    I’m a little late from the discussion, but I thought I’d post anyway.

    I am a 27 year old woman who had severe developmental problems when I was a child. I was diagnosed as mentally retarded, and when it was discovered that I didn’t have that, I was diagnosed with ASD.

    Not to go into too much, I had a lot of problems. It was absolutely horrible. I did the handflapping (which I did well into my teenage years, even age 18 but I no longer do it), I wasn’t talking even at the age of 4 years, etc.

    Anyway, something I never understood was how well I’m doing now (and how so many people who know a lot about Autism are shocked to know that I was diagnosed with it) and how I always heard that people with Autism “don’t get better”. Since I always heard that, I always assumed that whatever I had when I was younger, was in fact, something else entirely, but I never knew what it was. I mean, the doctors diagnosed me as mentally retarded and then literally said they made a mistake and diagnosed me with ASD. Perhaps they were wrong with me again? If so, what did I have, because there certainly was something wrong with me.

    Anyhow, most educational psychologists I meet and I tell them the story (the much longer and more detailed story) are baffled that I was ever diagnosed with ASD because of how I am currently. I never know what to tell them.

    I don’t know if this is encouraging or not. All I know is something my mother always told herself: Doctors don’t know my child like I do and they don’t know everything. In my case, she was absolutely right.

  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 1,057 other followers

%d bloggers like this: