From initial concern to DX - your timeline

thetwinkies&Vivi

I want to hear how long it took from you initially voicing concern to diagnosis with your child. I am especially interested in those with more subtle presentations of ASD/HFA. Did you "give it a rest" at any point, perhaps from being discouraged or unsure of your concerns after not getting the results you expected? I know several of you have mentioned it being a lengthy ordeal and receiving a diagnosis much further down the road after being assured several times that your child was absolutely NT.

I know the bar is low for a 3 year old and those with more subtle presentations very well may fly under the radar for some time. We go back Wednesday to hear the results from the evaluation today, and I guess I am just trying to prepare myself. What did you do in the meantime? DD1 was referred to OT again (with Autism listed as a DX, despite it not being finalized by the psych yet) so she will be receiving some support in that form, as well as being moved to a new preschool that we believe will be a better fit this year.

blondegirl74

I first voiced some concern at my sons 3 year well checkup. He had passed the mchat and all that up to that pint, but he had some streotypies and was less social then other 3 year olds that I knew. He also had some interesting interests. Our pedi referred us to a Dev. Ped and we saw her 7 months later. In the mean time he had started preschool and it was noted that he had a lot of anxiety, but managed ok. Our first appointment with the DP got nothing but a wait and see, he's a bit quirky. After a screening by our school district our Dev pedi agreed it was autism and then we had a full evaluation by our school district and he was placed in a sped prek and did great! ( sorry for no paragraphs, on iPad)

blondegirl74

Oh and he was 4 years 3 months at his big evaluation.

Junebug060609

Initially concerned at 15m (was losing words). Concerned enough to call pedi at 16m (lost more words and started shutting me out). Pedi said lets wait until his 18m appt. At 18m appt she saw the issue immediately and gave me a dev psych referral. At the time I thought it was just a step to get the hearing check I wanted...I now know he tanked the MCHAT and she suspected autism. Dev Psych had a wait (was right at time of new DSM, so they mayve been holding off on autism dxs appts). We were seen a day before he turned 21m and he was labeled as "at risk" for autism. It was officially dxd in January when he was 27m.

MirandaHobbes

Referred to EI at 19 months. Started EI therapy about 2 months later -- ST and general "ASD" one:one and group therapy under the educational diagnosis "at-risk for ASD". Started private ST around 22 months as well. At this time DS was moved to a preschool that was a better fit (a more structured church preschool/daycare). One year later, just before DS's 3rd birthday, the nuances of his diagnosis were much more apparent. It was for this reason that I'm glad we "took a break" as you said and just went ahead with EI and ST therapies for that year to wait and see where he ended up. Just before 3 we had the big eval with his developmental pedi who diagnosed pdd-nos, and we weren't surprised. He suggested an ASD inclusion preschool where DS could receive even more assistance and social skills therapy, and DS started there at age 3.

I still describe my son's presentation as "subtle" when he was first diagnosed but perhaps that's my mom goggles. I never encountered any evaluator who seemed on the fence about the diagnosis although there were a slew of family and friends who thought I was nuts. My geographic region has a disproportionately high rate of ASD than other areas so it is said the evaluators are great at spotting issues early.

kcisthebombdotcom

Around the time of DDs 15m well visit I noticed her language wasn't progressing and she seemed to be uninterested in kids her own age. When pedi checked her ears they were full of fluid so she chalked it up to that.

I brought it up again at around 20m when her ears were better but language wasn't expanding. Pedi brought out some toys and a book and played with her. When she read the book she pointed at pictures while saying the words and made good eye contact. She said that it would be impossible for a child with autism to do that but agreed to refer me to a developmental pedi on my insistence.

we initially saw the neurodevelopmental pedi at two. We were there for three hours and she spent the whole time happily playing dolls and tea cups with an intern. We were told that she had a few red flags but the doctor "had never seen a child with with such advanced play and social skills go on to be dx with autism", dx her with a language delay, and said her delay was likely due to poor motor planning. Our concerns waned for a bit until right around 2.5 we noticed she had learned the whole alphabet and 1-10 visually without any instruction whatsoever and started reading words off signs (not just logo recognition but open, close, stop, etc). When I mentioned that along with the neurodevelopmental pedi noticing some sensory issues she agreed to do the ADOS but said she wasn't fully convinced (as she was purposely doing naughty things to get my attention while DP was taking to me). She was dx shortly before her third bday.

She was dx even with more subtle issues. Even the stuff listed in the ADOS report was really subtle--she had eye contact but didn't maintain it as long as they would have liked, showed joint attention by looking to the test administrator when she called her name and followed a point but didn't initiate it, etc.

typeset

I said to my husband around a year when the kid started reading letters off signs that the kid was cruising toward an Asperger's Dx, but neither of us was alarmed. We thought he was just a bright, quirky, book-obsessed kid who would struggle socially. Between his 18 mo. (no concerns; former pedi joked about him going to college at eight) and 24 mo. checkups, I started to get scared.

We visited friends that fall whose very verbose kiddo shares his birthdate. Compared to her, I realized the bulk of his speech was memorized chunks of language. When you Google hyperlexia and echolalia, you get autism spectrum. I e-mailed our new pediatrician my list of concerns in September. He told me to contact the developmental medicine departments at a couple hospitals. I filled out the packets that week. The first center saw us four weeks later. Second opinion took eight weeks.

In between, I lost a lot of sleep and did a lot of Googling. My bookmarks follow the evolution of the Dx, from signs of giftedness (yeah ...) to hyperlexia to echolalia to autism. We didn't even call EI until after the first Dx because he met all of his milestones.

We got the second Dx the day before his second birthday and the Friday before his two-year checkup. I refused to do the M-CHAT that Monday.

hopanka

Concerns came and went for almost a year and a half. It was just a hunch that something was off, not neccesarily ASD at first, because he was pretty social and very well attached to me and the closest family. He was also very social and approprite with strangers and he babbled like other babies. Great eye-contact, during breastfeeding he stared at me, always looked for me, smiled and coo-ed, and laughed, just like all the other babies. What bothered me at one year old was really just his late crawling, which he learned at 11.5 mo, not pointing and not raising his arms when he wanted up. He was also excited to see spinning ceiling fans. He also did not know how to play pick-a-boo as early as other babies. Honestly, that is not much and that is why I didnt feel like sharing my concerns with anyone too often, because everyone, mainly my mom, always looked at me like I had three heads. Plus, then he finally always learned whatever I was concerned about or did some other amazing thing that blew my mind at the time, and it satisfied me for a bit. Never for too long, though. Now that I think about it - the ceiling fan thing he loved ever since he was a tiny baby and always shuffled his feet with excitement while watching them. At this time, he was easily re-directed, though. Not for long.

At about 22 months, so cca 8 months later, I felt "it" strong again, this time it was different, not a little hunch. I read early warning signs for ASD on a pamphlet I saw at a coffee shop, he fit 8 out of 12 criteria. The pamphlet stated to seek evaluation, if you say yes to more than 6 out of 12.

At this time what was tugging at my heart was the repetitive and compulsive stuff. It was getting a little out of hand, for example: we would be at an indoor playground and most kids would eventually explore most stations. My son would spend 2 hrs dunking basketballs in the basket over and over and have a great ole time. I was able to re-direct him and he would explore, but then go back to basketball hoops. He was also closing and opening doors over and over. He spent a long time flipping through pages of his favorite books and flapped arms while watching spinning tires. He was not that much of a social butterfly anymore either, at least not as consistently as before. There was the occasional mommy and me class where he had a bad day etc., whereas before he had always been happy there. The group did not change, nor was there any other reason (tired, hungry, sick...none of that was an obvious factor), so regression did not make sense to me in that setting. If anything, the other children that had had a hard time in the group at first, were getting better as they became more familiar, but my son was getting worse, even though he had started strong. But, as you can see, it's tough when you voice that as your concern to anyone, because the usual answer was that I was just paranoid, all kids have bad days for no reason sometimes...etc. Nothing screamed autism out-right, there were plenty of "good days", but I just knew a storm was brewing above our heads.

So, at the 2yr check up I asked about the big A word at pedi's well visit. He passed the test, pedi said he was certain DS ddin't  have it, and that he saw many ASD kids on a daily basis, who were nothing like DS. He categorically denied any concerns, citing 55 years of practice, yadayada. I left, then the summer hit and I stopped working, and less than 2 months later I was back in pedi's office, now categorically requesting an eval, not taking no for an answer. I was with my kid 24/7 that summer, no job to distract me now, and I just knew something was not right. I was as sure as he had been sure the opposite way two months prior.

He thankfully wrote the recommendation for eval, even contacted his colleague at UCLA to speed up the process of a waiting list, just to make me feel better. The colleague was the head of the intensive partial-hosp ASD program at UCLA. At the same time Reg Ctr was contacted and within the required 40 days we had an eval with their child psych. Psych dx'd him on the spot at 2.5yo stating that she was not 100% sure, but wanted services to kick in for him right away, and if she was wrong, then at least he would catch up sooner with all the therapy. Wise woman. What also helped, DS had a bad day the day she saw him. I'm sure, it was not a coincidence, though. She probably just knew how to get him going, so he would showcase all the concerning stuff.

Meanwhile - the UCLA specialist denied ASD twice (to this day DS does not have an ASD dx from them), even after she had a thick binder full of data on him, from the 4 month intensive EI program at UCLA that I enrolled him in, and the dev pedi was the MD that oversaw the program. Go figure.

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SantoriniSteph

DS was always a difficult baby, he has always hated sleep and still doesn't sleep through the night.  He has screamed about something every day of his life, and has daily meltdowns.  He hit all of his milestones until 11 months old.  He had started trying to walk and was saying baba (for bottle), mama, and dada.  At 11 months he got sick and refused liquids, after two days we took him to the ER for dehydration.  After that he stopped trying to walk and talk and wouldn't look us in the eye or respond to his name.  He didn't walk until 19 months and he is still non-verbal.  We did the wait and see from 11 months to 18 months and then called his doctor.  About 2 months of evaluations and the Dx ASD at 23 months old.  Services started 2 weeks later.

macchiatto

FWIW, I first had concerns before 6m (maybe 3 or 4? I don't remember for sure), was reassured by the pedi that things were normal until 2.5y when I self-referred to EI. He's been in and out of various therapies since 2y9m but his latest is "at risk for autism." Diagnoses the devel pedi has given him have included developmental delays, SPD, hypotonia, anxiety, developmental coordination d/o, and social skills delay and he is "at risk for seizures" as well (per neuro), and is also being followed by a metabolic specialist for possible mitochondrial disease. So 5 years later, things are still a bit muddy. He may never have a clear Dx, but what is clear is that he needs extra help with gross motor, fine motor, formerly oral motor, and social skills.

He does have a more subtle presentation. His EI was concerned all along about him flying under the radar for a while. He has been evaluated for ASD 3 times now with mixed results (i.e. one positive ADOS, several positive ADI-R's, mixed assessments of observations at home and with peers). We are going to see how he does in full-day K and he may be evaluated again in the spring. His devel pedi and the school district both said they felt that was warranted, even though neither felt he quite met criteria at their respective evals this past winter.

lvisser

Ez had major issues at birth until around 6 months with eating/gaining weight... Thought he might have CF and a host of other issues... I remembered Kai's speech therapist say that Ezra was doing just fine in speech at around 9 months old... At 12 months he started regressing with speech... At 15 months he had red flags for autism on the pedi questioneer At 18 months I knew something was wrong and scheduled a eval Started speech therapy around that time and in 6 months he made no progress and had a "quirky" sensory profile. Right after his second birthday he got his dx

mommy0411

My DS is level 2 in both repetitive behaviors and language but has a high IQ so while he isn't subtle to a professional he is pretty high functioning. At 17 months I noticed his development had completely stopped and he had lost words, social skills (stopped say bye bye, dancing) and was withdrawn. The pedi completely blew me off even though he wasn't pointing, making eye contact and many other red flags. We switched pedi's and that one sent us to a neurologist. The neuro diagnosed autism based on history and observing him at 21 months. It was confirmed by a team of psychologists at our local autism center who did the ADOS at 34 months. So we knew pretty quickly but my son also did not become verbal until 2.5. 

d.f

At 18 months I started noticing his attention span was shorter than his peers but I let myself be blown off by the "he's a boy" refrain from everyone. I figured based in family history it was ADHD which would be addressed in early elementary. He started preschool a few weeks before 3. It was an inclusive public school and the SpEd teacher approached me with in 2 weeks. Still ASD wasn't mentioned. By the end of Oct I had a referral to Children's but his pedi was expecting ADHD. The DP appt was in Early April. At the end of the 1.5 hr appt the DP said her gut and clinical knowledge said no ASD but possibly ADHD or NVLD, however, he had enough markers to go for the full eval. In July the full eval teased out PDD-NOS. He was 3 yr 10 months.