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In Their Own Words – Our Path to Diagnosis

This post is by Jennifer, a stay at home mom with two children.  In 2009 her family started walking for Autism Speaks and since then, we have raised over $38k and are gearing up for another year.  Our walk team is called Grape Jelly on Pizza because my son has a very strange appetite! You can check our her blog Grape Jelly on Pizza which was created  to help others navigate through all the difficult questions and behaviors associated with autism and to also remind parents that they are not alone.  Support – Compassion – Awareness.

It was not a simple path to his diagnosis.  Realizing there was a problem was tough.  Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven’t heard one story that was cut and dry yet about getting a diagnosis.  Here is our story.
My son was born at 13:13 on January 7th.  (13 happens to be a lucky number for me.)  It seemed like everyone was there to welcome in the first born grandson from both sides.  It was a happy occasion.  We had many visitors for months to come.  He was a squirmy little guy with a big smile.  He didn’t like to stay still, ever. He was hitting all of his milestones and his gross motor skills were off the charts.  He was climbing stairs before he could walk.  Everything seemed normal.

We didn’t want to wait, so we had another baby.  My daughter and son are 17 months apart.  Oh, how our lives changed when there were two.  Lack of sleep because my son still wasn’t a good sleeper and now a newborn.  They would both be up every three hours and not at the same time.  There were days that were just a blur.

A friend of mine had a son who was five months younger than B.  She would bring T over to play often.  That’s when I started to notice differences between the boys.  T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on.  Now, I’m not big on comparing but it couldn’t be helped.  Why was B so much different than T?  At night I would tell my husband about all the differences and would end up crying at the dinner table.  After a while he didn’t want my friend to come over anymore because of how upset I would get.

Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true. 

When we were alone he was fine.  We were fine.  It didn’t matter that he couldn’t talk.  Kids throw fits.  We could justify anything.  We were good at explaining what was happening or not happening away.  Confirmation bias.

Finally we heard the word autism.  Two family members stepped forward at two different times to express their concerns.  Unfortunately, they left it up to me to relay the information to my husband.  It is sorta like when people keep asking the girl, “When are you going to get engaged?”……go to the guy to find out.  It puts her in a bad spot.
At my son’s wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name.  My son looked up at the doctor and the doctor told us, “No.  He doesn’t have autism.  If he did, he wouldn’t have looked at me.”  OK.  Again, confirmation bias.  A doctor confirmed it, he didn’t have it.  Sounded good.  Everyone else is crazy.  Instead he wrote a prescription out for a speech therapist.  This we would do.

After the intake and he started therapy, his speech therapist suggested he had developmental delay.  OK.  No ‘autism’ word.  We kept with the speech therapy.  In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay.  Not autism.  The papers were received in the mail, completed and re mailed that same day.  I knew he needed help.  I waited and finally got the appointment call.

So we went and of course he qualified for services.  The report brought me to tears.  I HATE reading those reports.  Still do.  Then I get a call from someone saying she was his teacher.  I was like, what?  Turns out he qualified for 1/2 days, 4x a week and he could ride the bus.  He started when he was just 3.  I had never been away from him with the exception of having my daughter.  It was tough.  Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place.  Autism?  He doesn’t have autism.  Speech and developmental delay yes but not autism.  I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident.  See, every professional we had dealt with up to this point had never used the autism word.  Since then we found out why.  If a professional says ‘autism’ to you and you don’t have insurance, then they are responsible to pay for your services.  Didn’t know that did you?

I also started going to a parent support group through the IU and after the second time a mom told me the truth……speech delay & developmental delay = autism.  We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance.  My head was spinning and I went into depression.  I swear I lost days, weeks and months.  Feeling completely numb and truly alone in my quest to get help.  I tried my best not to show the stress.  Like I was in control but I was falling apart.

Eventually, we went in to see the developmental pediatrician.  We walked out with an official diagnosis of autism.  For the first time I had a smile on my face.  I knew what it was, it had a name and I was going to do everything in my power to help my son.  Nothing was going to stop me and nothing has.  We are a strong family unit out to do whatever it takes to not only help our son but to help others.  We are not alone.  You are not alone.  We are all here for each other.  We need to continue to reach out to others.

“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. Barbara Pons
    February 16, 2012 at 12:53 pm

    Wow!!! Very interesting and thanks for sharing. I knew there was something not right with my son and the only person I had to fight was my husband. He denied everything i would say to the doctors so they believed him. Until the day I went to see a psychologist who finally diagnosed him with PDD. She diagnosed him by just watching him play. He was 3 and driving his car up and down her leg. The doctor said usually when a child does that they look up at the person but my son didn’t care where he was driving his car.

  2. Annie
    February 16, 2012 at 10:37 pm

    Hi, Your story brought me tears. It was almost what we had gone through with my son. Just loved the way you wrote it, in each word. And yes, we are not alone. Take care


  3. T
    February 17, 2012 at 1:57 am

    Thank you for sharing your story. Ours was almost identical. Our “speech & developmentally delayed” son is now 9. it has certainly been an adventure (and continues to be), but I love him more than I ever thought I could love another human being. You are so not alone.

    February 17, 2012 at 2:53 am

    Te entiendo perfectamente. Mi hija de 4 años está diagnosticada como retraso del desarrollo, pero en desfinitiva todo trastorno del desarrollo es un autismo, con diferentes actuaciones. Hoy estoy más animada. He pasado semanas, meses sin dormir, llorando a todas horas. Hoy mi niña es la estrella más bonita que yo podía imaginar. Dice unas 25 palabras aunque no las pronuncie perfectamente y fisicamente se mueve muy bien, hasta hace una pequeña carrera. Animo a todos los padres, estos hijos son tan especiales como maravillosos. Tengo otro hijo de 13 años. El también ha notado los problemas en casa y mi marido, al principio ni siquiera veía que la niña tenía algo difrente. Ya va saliendo el sol en este duro camino. Un saludo. Merche

  5. February 17, 2012 at 11:38 am

    I admit, I don’t always read the newsletter emails. Today I decided to read it while I’m sitting here waiting on my daughter. Today I decided to click the “In their Own Words” link. Today I am glad I did because today I learned something useful. See, I have point blank asked my girls’ 7th grade principle if he felt they were so far behind in their social skills and maturity levels that I should get them checked, if I should talk to their pediatrician. First time I got, “they’re in 6th grade, they’ll mature” and “I can’t tell you that, you will have to do what you think is best.” Of course I swallowed that excuse and pretended they would mature and be better. This year (7th grade) as I’m sitting in an IEP meeting for speech evaluation the principal, teacher and speech teacher all commented on how immature they are, easy to cry, feelings hurt, insensitive to other’s feelings, etc. I again asked, what do I do, should I get them checked…..I get “you might want to have them evaluated for some developmental delays.” I cornered their science teacher at an off campus event and addressed her parent to parent, not parent to teacher and asked her what she thought. She said, “I can’t say this as a teacher, but if it were my kid, I would. But I wouldn’t tell the school when you find out for sure.”

    i didn’t know they weren’t allowed to actually say the words. I thought for sure the ex-ed teacher would at least be able to say…here’s what I see. Silly me, right.

  6. February 17, 2012 at 2:21 pm

    My 3yr old is also speech & dev. delayed. We have been thru the ringer trying to get an idea of what is going on with him but so far everyone has told us “come back next year”.. ugh. We also do the 1/2days dev. preschool and boy was that hard!! Hugs!!!

  7. Edna
    February 17, 2012 at 4:30 pm

    Your story is almost identical to ours. My son, is now 3y9m. He is the 3rd born after 2 girls and is 13 months older than my 2nd boy. You can imagine how hard the past years have been. We still don’t have a formal diagnosis, they say it’s severe speech delay and developmental delay, but he is getting 8hrs of therapy and he will soon start to go to school from 9am to 1pm, but his therapist will go with him at first. He is making so much improvement in comprehention, speech, social skills. We are very happy but I know that there will always be issues that will worry us. I don’t know if we will ever get a diagnosis because his behavior keeps changing and maturing (not as much or as fast as I would like). I will keep fighting and I won’t let anything stop us. Thanks for sharing.

  8. Jennifer
    February 17, 2012 at 5:00 pm

    Grape Jelly on Pizza is also a page on Facebook. I would love for you to join and share your experiences.


  9. Y
    February 17, 2012 at 7:46 pm

    I’m not sure I understand. If a diagnostician diagnoses a child with autism and that family doesn’t have insurance, is the diagnostician financially responsible for the services the child needs?

    If that is the case, then WOW! There is a serious flaw in the system leaving potentially thousands of children without access to services because a professional can’t risk giving them a diagnosis.

  10. Nancy Miltenberger
    February 17, 2012 at 8:08 pm

    Jennifer what a wonderful article. I know your words will help many other families!

    February 18, 2012 at 12:05 am

    We had the same happening to us. Now David is 8 years old and I have to say is doing much much better. He does a lot of therapies and is very hard on him and me too, but worth it. We are doing a therapy called brainhighways.com and David is improving faster. We are trying everything, biomedical treatments, speech, occupational therapy, auditory processing therapy, sensory integration, horseback riding and this one, brainhighways on line, which he will have to creep and crawl for at least a year.Dont get discouraged God will help us to do the impossible!!! Keep pressing on and the reward will come. Working hard plus faith = reward.

  12. Tiffany A
    February 18, 2012 at 5:11 pm

    My son was recently diagnosed woth ASD. I went through the usual depression and blaming myself, but with a great support team I’m seeing improvements daily!

  13. Jennifer
    February 18, 2012 at 5:22 pm

    I could have written this exact story. Our pediatrician also said our son didn’t have autism but my father kept pushing me so I went over her head to a neurologist who confirmed he did have it.
    But after a years worth of behavior therapy, speech therapy and occupational therapy, plus the preschool he qualified for at ages 3 and 4 – now at 6, you couldn’t even tell. =) Of course I can notice the suddle things but compared to where he was, it’s a miracle. When he was first diagnosed it was moderate autism, now it’s mild PDD.

  14. February 18, 2012 at 5:25 pm

    “While I was holding my son on my lap, the pediatrician said his name. My son looked up at the doctor and the doctor told us, “No. He doesn’t have autism. If he did, he wouldn’t have looked at me.”

    Are you kidding me?

    Sometimes professionals are so unprofessional it makes me want to scream. As one on the spectrum, perhaps I lack Theory Of Mind. But this doctor has no theory what so ever.

  15. Guillermo Ponch Flores
    February 18, 2012 at 5:30 pm

    My name is Ponch, and I have a 16 yr old daughter who is autistic. At first I thought it was Gulf war sindrume(sorry if spelled wrong). The militery didn’t offer any help or aid to this day. The government wouldn’t give us any support. People said she, we should get some benefit money. They turned us down, and I fought for this place. I have no family here, except God and call on him in prayer everyday, night, he hears me so much I am thankful he didn’t change his name. I’m, we are prayin. My daughter beside me for you and your son, family. God Bless You and God keepyou safe.

  16. Mary Nasif
    February 18, 2012 at 5:34 pm

    Amazing story….sounds like you were writting about our son. He now is 36 yrs old, and lives independently…(with our involvment every day:) he was called every name but not Autistic. I think it was so he would fit into some type of educational mold. Finally age 36 (13 past evaulations later) we get a professional diagnosis( 2008) Autism /PDD. Also hard to believe but the first paragraph matched the same first paragraph in his neuro-psyc evaulations/ developmentaly delayed/ Lanuaged based/ question of autism done when he was age “3:. . Over the past 36 yrs we worked on his abilities but experienced all the nightmares every child and parent go thru in the “normal” raising of a child who is a square peg and cannot fit into a round hole…called special needs. We all have scars that cannot be healed. Now we even face some legal charges because of his inability to socialize and was taken advantage by young adults in the community. We figure this is just another chapter of the journey on how we have to teach others as we ourselves still keep learning. Our son is fantastic, loving, and extreemly intellegent with electronics. Loves music..music….music. We all now can laugh at the Autism things that happen daily. Like you our mission is to teach others to make their journey more smoother than the pain and battles we lived through. Mostly to enjoy the young wonderful man he is and plan a safe well planned life for him when we are not here to be his advocates. We strogly believe the new words, “Autism Speaks …Time to Listen”…is the new pathway for the future of these wonderful folks. It is not an illness so there is no cure and mostly folks need to learn they have so much to teach…God has given us a wonderful journey as a family and we have met so many wonderful people along the way….Since the legal issues I have started writing my own memos and maybe one day turn into a book. Hope this give others encouragement that the long hrs, dedication and always raising your child as an adult lifts up your hearts to dream and reach for the stars…not just reality as I was told many times by so many professionals….Gad made all of us for a reason.

  17. Judy Nelson
    February 18, 2012 at 5:40 pm

    This story resembles my Grandson’s journey to diagnosis. So proud of my Son and Daughterinlaw for being strong and keeping going. My Grandson is doing better since we all know what he has….

  18. David saenz
    February 18, 2012 at 5:56 pm

    Wow! That is exactly our story of our little Elijah :). Thanks for your post.

  19. Katie
    February 18, 2012 at 7:15 pm

    This story sounds like ours. We did start therapy a little sooner when he was twenty months. For six months of therapy I believed my son was just delayed. We just got our answers that it was autism two days after Christmas. I knew he was different because my older three children were so much alike and he was in his own world. He is mild on the spectrum but I am still trying to accept it. He has the developmental delay with a speech delay too. Thanks for sharing your story, it helps to hear other parents talk about it and be so positive. Best wishes.

  20. Sarah
    February 18, 2012 at 8:12 pm

    This sounds almost exactly like our story. It’s hard when you know something is wrong but feel like no one will just say it! I have been going through that for over threes years now and just got a formal diagnosis now that my daughter is six. It sounds funny to be happy about a diagnosis like this but when you have known something is wrong and no one will fully talk about it or be the one to step up and give the diagnosis it gets really frustrating. So, I can truthfully say I am happy to finally have the formal diagnosis. It opens doors fo more therapy that she needs and it validates all my concerns over all this time. Also, I finally feel like we have a place where we belong whereas before I felt like an outsider without a diagnosis.

    • Sarah
      February 18, 2012 at 8:28 pm

      I will also add that she got into speech and language therapy and was considered developmentally delayed starting at age 3. When she started special Ed in school for kindergarten she was given the diagnosis of intellectual disability. She has also had serious sensory problems and behavioral problems. She watched others play and seemed to want to join but didn’t know how. She was never diagnosed before because she could make eye contact and liked to pretend play by herself. It has been a tough road but we have fought managed to still get her most of what she has needed.

  21. February 18, 2012 at 8:53 pm

    I just read your post and I swear I feel like your words came from my own finger tips. My son, just turned 2. At his 2 year check up, “autism” was also mentioned. Immediately we got him an eye appointment, a hearing appointment, and a developmental appointment. Last week, a team of 6 doctors evealuated him for 2 hours. After this time frame, an official diagnosis of “At Risk Of Autism” was made. My head is spinning right now. I have also started a blog to kind of help me get my thoughts out. Thank you for sharing your thoughts.

  22. February 18, 2012 at 10:34 pm

    Thank you for sharing this story with us all!! Hugs to all!!

  23. Rick
    February 18, 2012 at 11:27 pm

    My son Kaegen was diagnosed at 3 and started school right away. He is now 9 and is in a neurotypical classroom without a para, plays hockey and can smoke me at Call of Duty! He is wicked smart, kicks butt in math and reads very well but is working on his comprehension. Keep working hard and keep fighting the good fight!!

  24. lori
    February 19, 2012 at 8:00 am

    your son is AMAZING….

  25. Ziba
    February 19, 2012 at 11:23 am

    Thank you for sharing your story. I too have walked in the same shoes.

  26. Karen
    February 19, 2012 at 3:18 pm

    I really am so confused! My son is 8 years old. He is the youngest of 4, so we know of the milestones that should be reached. We have been through early intervention with communication, and still have that for special education. Had him evaluated in 2008 for Autism and came back with PDD-NOS and maybe ADHD. The school did evaulation and has him at ASD. Just started with another behaviorial ped, and because our son makes eye contact and talks about special toys (has liked beyblade for about 3 years now) doc feels he is not Autisic. The schools special education teacher who deals with him daily, clearly feels he is Autisic……I really could use help! I, like many of you, do alot of reading..I feel like SOMETHING is being missed. He is also VERY aggresive! I want a diagnosis that fits my son so I know what direction to go…I feel so lost and time is slipping by! Any thoughts?

  27. Nancy Gagnon
    February 19, 2012 at 3:56 pm

    I am an experienced teacher of first grade. The children come in at 5 or 6 years old. I have have a couple of children who have many characteristics of Sprctrum disorder, but our district will never come up with a diagnosis. Now I understand more why, but really why don’t they want these kids to get as much help as possible in the early years?? I have also had a few kids who DID get help early. They are doing so well. Two have completed college, one is studying to be a lawyer. As a teacher, what else can I do to help my parents? And the kids?

  28. February 20, 2012 at 9:02 am

    Jennifer your story is so similar to mine. I’m reading that alot throughout these comments. Our son was seen by a neurologist at two years because his doctor suggested it since his language development had regressed and wasn’t progressing as it should. We had also been blessed with another son who was six weeks old at the time. She said he was not autistic, which was the first time I had heard that word when talking about his progress, but she wanted me to keep track of his speech progress for six weeks. I wrote down every word he said for those six weeks each day and underlined it if it were a new one. I faxed it to her and she suggested speech therapy for him. A few months into his sessions his speech therapist had the courage to tell a young mother of two boys that she felt her son had autism even though a doctor had told me he didn’t. I began researching it and knew as soon as I began reading about it she was right. I felt so bad that I had explained away unusual behaviors because I was already told he didn’t have it. I had quit my job when he was born and had never been away from him and somehow I missed it. Spencer was three when we received his official diagnosis, his baby brother, Mitchell, was nine months old. Our school district had a wonderful program we enrolled him in and he rec’d services through private practices as well. The Play Project was the best therapy we found for him. Mitchell progressed as he should and was able to speak sentences before his big brother. What a difference I saw in the two as far as development. Spencer is now 14 years old, has been fully mainstreamed in general education classes in school since April 4th of 1st grade and has a 4.0 gpa. It’s hard to express how proud I am of him and his brother for supporting him and helping him achieve all he has. We’ve been a great team as a family and as everyone knows it’s not easy but we know exactly how blessed we are. Thank you so much for sharing your story. You’re right, we are not alone. I’ll make sure I like your facebook page!

  29. February 20, 2012 at 10:33 am

    Great story you put every thing into words that I couldn’t God bless you and your family.

  30. February 26, 2012 at 12:19 am

    Wow! When I read this, we all have been doing the same thing, found out my son had ASD at 2 1/2. He is 12 now and still does not have conversation. Barely speaks at all, he shows me what he wants. I pray for all our children and us parents for a miracle. In Jesus name, Amen. What are we going to do when they are adults? And we are to old to bath them, wipe their butts, change their clothes,brush their teeth, etc., I hope and pray he starts doing this automatically on his own. I want him to be able to take care of himself someday and not end up in a hospital. :(

  31. Kelly
    February 26, 2012 at 10:57 am

    This brought tears to my eyes. I’m currently in the process of all this with my 2 year old son who has a younger brother (mine are 13 months apart). I also have a 9 year old daughter who recently got diagnosed as an Aspie. We have early intervention involved. He is only on a 12 to 15 month old level for communication, cognitive, and social. With that said he will het OT ST and start preschool when he is 3. The reason they won’t push autism is his gross motor skills are so high and he too will look at you when you say his name. All they will tell me is he has “red flags” and is having severe sensory issues. It’s very overwhelming at times. Should I seek out a child behavior therapist or Psychologist this young (he is 26 months old) or keep going foward with these agencies who do therapy but cant diagnos?

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