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How Long It Takes to Diagnose Autism

Why It Took 4 Years to Diagnose My Daughter's Autism

Recently, I was recounting the story of getting my daughter's autism diagnosis to a newly made friend, and how I had that moment of validation, of "See? I'm not crazy. I knew something wasn't right." What was most interesting to me, though, was that even after all this time, it still hurts to the core to tell the story of everything we went through. I thought I was past that and had dealt with it, but it still brings back emotions so raw that I feel as if I'm sent back to experience the moment again.

"Something Was Different About Her"

When E was an infant, I couldn't tell any major differences between her and other babies. She was my first child, and I didn't have a lot of experience. I thought it was normal to have difficulty with nursing, and normal that babies slept through the night by 10 weeks. I did notice that she screamed as though in pain when in her car seat, but I thought maybe something wasn't installed right, or maybe she got motion sickness. Still, I avoided going on trips with her very much because of the stress on both of us. Then, at her three-month checkup, the pediatrician asked if we were doing tummy time. I said no, and she said we should start.

That was when I first started to wonder if something was different about her. We began tummy time that very day, and she began to scream. This wasn't a cry — it was a scream, like someone-just-stabbed-me-and-it-hurts scream. I thought, "OK, the doctor said she might cry and that I should try for a few seconds and work up to a few minutes." I tried, but the longest I could leave her there was a heartrending 20 seconds. After three weeks of trying and no progress, I put an end to tummy time. We spent our time walking in the stroller on trails instead because she was really engrossed with nature and perusing books about animals.


When "Don't Worry" Makes It Worse

At about 6 months, we joined in a small playgroup, and I noticed small differences. I noticed that other babies smiled a lot, drooled a lot, and put things in their mouths. E did none of that. Sometimes she would smile, but she never put anything in her mouth or drooled. I brought it up at her next check and was told not to worry about it. This began a trend for the next two or three years.

At her nine-month check, the doctor was impressed with E's verbal skills. She was pronouncing very clearly and could say three- or four-word sentences. I mentioned that she seemed very obsessed with the same TV show (Barney) and that she would sit and "read" the same book for three or four hours sometimes. I was told not to worry about it, that I was in fact lucky to have a child with such focus. Yes, but she isn't interested in anything or anyone else. I was again told not to worry about it.

At her 12-month check, I mentioned that she wasn't crawling and not inclined to at all. She had begun to cruise a bit, so I was told that some babies skip crawling and not to worry about it. This was the only time I felt reassured, since, sure enough, two weeks later she started to walk.

At her 15-month check, I was really worried because she wasn't interested in food, both generally and in trying anything beyond super-pureed fruit, yogurt, or those soft Gerber star shaped "crackers." I was told to keep trying and not worry. This was the first time I felt like physically shaking someone and saying, "Don't tell me that! Something isn't right." It was also the first time I began to feel like maybe I was a neurotic and "crazy" mother.  At her 18-month and two-year checks, I said nothing when asked if I had concerns. I told the doctor everything was fine, but it wasn't.

A Mom's Need to Find Answers

Then three things happened simultaneously that gave me a little push toward wanting to know what was making her different enough that she was behind in physical and social development, but not enough to be glaringly concerning to people besides me. First, I went back to work and had less time to spend trying to get her engaged in social activity, in trying to persuade her to eat food (she often took two hours to eat a meal). Because I was back at work, she started at preschool in a 2-year-old class, and her teacher noticed how great she was at reading and talking, but also noticed the small differences from other kids. The most pronounced thing was that E played parallel to but not with other kids. Third, I found out I was pregnant with my second daughter.

Suddenly, I needed to have something in place for E before the baby was born. Her teacher and I suspected it might be some form of autism. I took her teacher's observations to her three-year checkup, and the pediatrician finally referred us to Early Intervention. That was a frustration unto itself, because they wouldn't categorize her as autistic, but they said she has a speech development delay and had her see a speech therapist. After three months, the speech therapist said, "She doesn't have a speech problem," and we were released from the program. At that point, I took a hiatus because of having the baby and helping E through the transition of having a sibling (she withdrew into her own world for about a month).

A Moment of Truth

When H was about a year old, we moved to Texas, and that is when the you-know-what hit the fan. Big-time explosion. New preschool, new town, new routine, new job, etc. Everything in E's world was changed all at once, and she did another major withdrawal. Her diet became Cheerios and yogurt only. Looking back on it, it's eerily similar to that scene in Temple Grandin where she tells her aunt that she only eats yogurt and Jell-O. Then she started to run away from preschool, and I would have to leave work and pick her up. Things got progressively worse, and they were going to kick her out of preschool if it didn't stop. The director said she was just a terribly behaved child. I said I thought she had autism. After looking at me like she thought I was nuts, she said she'd hold off on expulsion until after I saw the local psychologist about E. I took her in, and he said he didn't think she had autism, but perhaps was high-strung. I looked at him, and I looked at my daughter, who was sitting quietly reading her animal board book and who would sort of answer his questions but did not directly have eye contact with him in the four sessions we had with him. I thanked him for his time, told him I thought he was wrong, and left.

I called my husband, who was still in Oregon trying to sell our old house, and told him to take it off the market. I said that we were moving back, and I was quitting my job until we could get our child the help she needed. She was far more important to us at that point than our dream of trying to move somewhere warmer, and I felt like we were seriously losing the battle. So we moved back, and I did my research this time on psychiatrists who had experience in testing for autism, and we chose one. It took another month, but about the time she was 4 1/2, we finally got a diagnosis of high-functioning autism. The psychiatrist told me that she could understand why everyone might look at her and think she was just a quirky or eccentric kid, but she clearly had the lack of eye contact and the "obsessive focus" on one or two subjects that were symptomatic of classic autism.

She also looked at me and said, "See? You're not crazy. You knew."

Join The Conversation
mdegeyter1385752378 mdegeyter1385752378 3 years
My name is Patricia DeGeyter, and I am a mother of an autistic child, my special son, Matthew. I was raised by my mother's Italian influence into a catholic family of eleven children. I lived with my mother and father along with my five brothers and 5 sisters. Growing up I always wanted to be a teacher. Shortly after graduating high school, my parents had bought a small Italian restaurant, which I worked at for approximately nine years. While working at my parent's restaurant, I also attended college for a few years and studied restaurant management. My husband proposed to me, at my parent's restaurant. I then got married, and also anxiously wanting a child. My story is based on my experience raising an autistic child that I will share and make awareness. After learning of my son's autism diagnosis, autism had become my career. I will take you on a journey about my life in raising my special child, from the earliest stages up until now. I will illustrate my struggles and hardships in getting through it all, and the ending results of having such an amazing autistic son, who has overcome many very difficult obstacles in his life. Today, I feel I am meeting my son for the first time in my life. Now, I see my special son climbing the ladder of life with confidence and the will to be successful in life. We are always dedicated in raising autism awareness.Please check out the book my wife has just published ."You Are My Son " A Mother's Journey On Raising An Autistic Child . It is posted on many major book retailer web site . May god bless you
MichelleMayes MichelleMayes 3 years
Wow, the similarities in our stories are so similar I think your story should be mandatory required reading for all pediatricians on early signs. We didn't have the walking issues but that clear pronunciation, but not enough words, been there. The horror of tummy time. Toilet training - oh wow I still get chills. My favorite is the psychologist who decided I needed parenting classes, there was "nothing wrong" with my child. But when the speech pathologist came back saying she had a 2 year speech delay, and the school came back saying something is wrong did a complete 180 - but never apologized for his early suggestion that I was the issue.
Sharon93041 Sharon93041 4 years
Hi,I understand how you must have been feeling. My daughter is 10 has only been diagnosed in the last month with aspergers. Looking back I have had different concerns like toileting, highly sensitive, trouble feeling excluded by friends, teachers telling me she is too detailed with school work from pre primary, not listening, clumsy, etc etc etc. Even drs saying she is just manipulating me. Then school refusal which is still now. She is a very intelligent caring girl. I have now been told she should have been diagnosed years ago but there is not much I can do now. Going through early puberty doesnt help, it so hard. I cannot even get professional help now as the so called psychologist gave my husband and I the most ridiculous advise on how to get her to school. Even the Autism association said they couldn't believe what she said. So we are back at square one, to tell you the truth I don't even know if the diagnosis is correct as it was the same psyc that diagnosed her. I have spent years going to and from drs to still receiving no help as to what to do but put her on drugs.
AngelaNivanthi AngelaNivanthi 4 years
My daughter had some sort of same issues, lack of eye contacts and regression of speech, we got to know those signs when she was 2 ans half like, but before that she was talking 2, 3 word sentences, she stopped talking and kept on making noises. she doesn't like opposite sex kids and strangers, and like to look at her books and spend lot of time on that, watch cartoons like Tom and Jerry and Oggy witch don't have spoken words, etc. we went on lot of medical examinations and MRI report was good, as big relief. mean time we send her to a pre school and 2 and half was bit early for Sri Lankan kids to start pre schools but we did. we gone through a psychiatric and she suspected her having autism and we were going under speech trophy and lot of other activities to gain eye contact. now she is 4 and half on this December, she is now have good eye contact and good at dealing with other kids. still we visit doctors on periodic checkups and she will be good, i believe. think we need to go for a IQ test also. good luck with your kid, spend much time with her, anyway i gave up my job.
Jevemor104 Jevemor104 4 years
Laura, my daughter seems to feel no pain, have no fear of anything (except people, social fears and anxiety) She just plays by herself, and occupies herself for hours..has extraordinary imaginary play, and she's been sleeping in her own crib and room since three months, would just roll over and go to sleep, no problems..everyone told me I had a dream child, but I've always felt like there was more, a reason..sorry if it feels like I'm bragging, I'm not meaning to..I just want to say as many things as I can remember so anyone that has experienced this can refer me somewhere..I swear this author's story brought tears to my eyes, it sounded so much like her...except for the screaming..good luck to you!
Jevemor104 Jevemor104 4 years
Alyssa..Clearly..all children are NOT the same. My two year old talks like a 5 or 6 year old. So yes, its very possible. Especially for a high functioning autistic, they are not a smart learning disabled child, they are a very smart, highly advanced child..a common misconception, or stigma, that obviously needs to be changed.
CoMMember13627405542584 CoMMember13627405542584 4 years
Three or four word sentences at 9 months??? Really? I have two children and there was no 3-4 word sentences at that age.
Jevemor104 Jevemor104 4 years
She also skipped crawling..and cruising for the most part..Started walking at just about 10 months, just got up and went, completely unassisted. By the next two weeks, she was walking everywhere by herself!
RondaLongard RondaLongard 4 years
My husband was diagnosed with the same thing. It is sometimes difficult to deal with, but I recognize his strengths and weaknesses and we muddle through. His mother still doesn't realize how to react, or understand his diagnosis since it was in the early 70's when most people never even heard of autism. Thank God someone listened to you finally!!
Jevemor104 Jevemor104 4 years
She also doesn't eat all day. She does eat a large variety of foods, new foods, and LOTS of veggies (mostly veggies, actually) however, I'm lucky if she eats once...she is SOLID muscle, she has a six pack, and can lift her entire body by one arm in a pullup! I don't know if that's normal..
Jevemor104 Jevemor104 4 years
My daughter's as well! I am getting ready to have her "tested" of some sort..I imagine she is advanced of some sort, I was in Academic Talented classes since fourth grade, taught by high school teachers at that level, and she was in Yale infant studies when she was six months old. However, she had delayed speech until around two..she is two months shy of three, but speaks like a 4 year old or more..and has the vocabulary of a six yr old. She recently developed a stutter, on certain letters as well..and has high social anxiety, with people she knows well, and does not (Halloween was a little traumatic-and NOT because of the skeletons..she LOVED People think I'm being paranoid..but it IS a curse as well as a blessing..I've already had to call poison control twice recently, because she gets into things she shouldn't be able to..I have to re-childproof, but thinking with the mind of a teenager! It's really nervewracking! She constantly gets out of her baby gated room..Anyone have any resources of where to go and have her IQ tested or have her checked for forms of Autism? If she is Autistic, she is very high functioning.
laurawilson53602 laurawilson53602 4 years
this sounds similar to what we have been going through with our son he is 4 and half has very limited speech absolutely no danger awareness poor social skills is very repetitive in his play bad daily life plays mainly on his own or parallel to others and just copy there play and stone speech he is my second bad at 4 months I knew something was off but no 1 beleaved me as a baby he cud sleep through the night scream wn placed on floor or certain blankets were put on him he never dribbled not even wen teething didn't crawl had no eye contact walked at nearly 15 months old spin in circles which he still does ,what were we told "its cause he a boy they do this different" I went to college wn he was 2 he was at there nursery and they said he bin fine he sat in corner all day (6 hours) filling and emptying sand !!!!!! I took him out that nursery wn he was 3 he got a place in the nursery he still at now (they are mainstream but have special needs kids and trained staff) after his first day they sat us down and said we beleave he has autism and so got him referred to specialists who we r still seeing bad fighting to get a diagnosis today !!! for 4 years everyday I have had to fight ti get what he needs and will continue to do so ,he now becomes violent wn upset or just for no reason my 7 year old daughter has had teeth knocked out hair pulled out scratches etc all over her I've had split lip cuts and bruises my partner black eyes and cuts we have been pleading wiv specialists for months for support in the home ,yesterday I was told social services will b checking my daughters safety and our home due to my sins actions !!!! so we ask for help and get punished !!! this isn't even half the stuff we have to go through please cnt tgubk in trying to scare you write have good days also and they r amazing we love birth r kids so much thats why we continue to push to get him diagnosed and get support we need ,so never giv up fighting for your child and if u think sumfink wrong trust yourself u no best ,good luck x
SusanUrban22834 SusanUrban22834 4 years
My 10 year old daughter has social problems, ADHD, dyslexia, and what I believe to be high-functioning autism. We've had her evaluated 3 times but the doctors have yet to give her the diagnosis. Sometimes girls are hard to diagnose.
ElizabethKerr29526 ElizabethKerr29526 4 years
Janine- your daughters story is nearly identical to my son's!!!! Like you, he is my oldest - I had no idea what was "normal"! He had delayed speech however, I believe, related to a mulititude of ear infections early on, not autism. He is 6.5 yrs old, and still on active chemo for leukemia. Until the chemo ends, no one will commit to a formal HFA dignosis. Like you, I KNOW something is off, I just don't know what to call it.
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