Parents of ASD kids: What was your assessment/diagnosis process like?

[beachcomber]

I've noticed over the past year that a lot of parents posting questions about their kids possibly being on the Spectrum have had frustrating experiences with their family doctors around their concerns. It got me to thinking about my own process of getting to a diagnosis for my daughter. Then I did some talking with other parents of kids on the Spectrum that I know. I definitely saw a lot of the same stories being told over and over.

So, I'm curious. What was YOUR experience like? Here are some questions to ponder and (hopefully!) discuss...

• How old was your child when YOU noticed things seemed not quite right?
• How old was your child when they received an official diagnosis on the Autism Spectrum?
• When did you first bring your concerns to your family doctor or your child's primary doctor?
• How were your concerns addressed by this healthcare professional?
• Did you take concerns to any other healthcare professionals (health unit nurses, for example)?
• How many visits did you make to a family doc or your child's primary doc before getting referred to specialists?
• Did you have to specifically request referrals or did the doctor suggest them?
• Did you ever feel that your concerns were minimized by the doctor?
• If that was your experience, did it make you less likely to bring further concerns to that doctor?
• What would you change about the timeline for how your child was diagnosed?

I'm not going to post my own experience just yet. I want to hear what some of you have to say before I put my own two cents in!

[Piglet68]

I noticed something wasn't "right" with DS when he was 2.5 and started being very aggressive. If some little toddler walked up to him and looked at him he would try to scratch the kid's eyes (now I am pretty sure it was because he was so uncomfortable with direct eye contact, but it was years before I figured that out). He would often scratch or bite other kids, and if he got frustrated he would erupt and often get physical (hitting, throwing things). Twice he was "evaluated" (once at around 2 3/4 and again at age 4) and twice we were told it was normal and he'd grow out of it. But he never did though he learned some self-control as he got older. When he was around 5 I noticed he wanted to play with other kids but didn't seem to know how to join in and how to play appropriately, respecting boundaries etc. He is now 6.5 and I just finally figured out he probably has Aspergers. We went to see our family doctor a couple of weeks ago and asked for a referral to a pediatrician, who will then refer us to a psychiatrist or other expert who can diagnose. I'm in Canada and that's the process we have to go through, apparently. My doctor asked a few questions but basically just gave me the referral as I'd asked. 

We're in the early stages of getting a diagnosis. I think DD may have it too, though her issues were less obvious; she just seemed to struggle in certain social situations, would get really angry and hateful towards certain kids she felt had "slighted" her, but otherwise functions fairly well most of the time. It wasn't until I was reading about AS for DS that I realized that she fit many of the descriptions of girls with Aspergers. 

[Stephenie]

How old was your child when YOU noticed things seemed not quite right?

DS was about 4 months old when he quit sleeping. As in he's only slept through the night about a dozen times since then. So that was our first sign that we noticed. After that he just always seemed intense to us. His first birthday I noticed a few things I knew were red flags for the spectrum,  but I pushed it out of my mind because he was meeting his verbal milestones. 

How old was your child when they received an official diagnosis on the Autism Spectrum?

A few months short of his fourth birthday.

When did you first bring your concerns to your family doctor or your child's primary doctor?

Actually, I never did. He was part of a follow up evaluation program with the NICU that he was in after birth for a brain injury. They first noticed sensory processing issues at 2.5. Shortly after that I talked with his neurologist, who wasn't sure what we were dealing with, but said "Something else is going on." and that he had "a lot in common with autistic kids." He reccomended further evaluation, but we moved cross country before we could get that set up. 

Did you take concerns to any other healthcare professionals (health unit nurses, for example)?

We spoke with everyone from his OT to his naturopath (who in our home state was his primary care) to a pedi (in new state) to two neurologists,

How many visits did you make to a family doc or your child's primary doc before getting referred to specialists?

We started out with the specialists 

Did you have to specifically request referrals or did the doctor suggest them?

Doctor suggested

Did you ever feel that your concerns were minimized by the doctor?

Depends which one. We had one tell us there was no way he was on the spectrum without really talking to us or addressing his spectrum like behaviors (echolia, lack of eye contact, social issues, hand flapping etc)  and try to give us adhd meds at three. We'd been in the room only a few minutes and were not asking for meds, we wanted an eval. Every other professional we'd ever seen, ones that knew him for a long time had concerns about him being on the spectrum. 

When we finally got into a developmental pediatrician, he was wonderful. Addressed all our concerns and was ready to help us with whatever we needed. 

If that was your experience, did it make you less likely to bring further concerns to that doctor?

We never saw that doctor again. 

What would you change about the timeline for how your child was diagnosed?

I wish it would have some sooner, but it was partially moving, partially finding the right doctor to diagnose etc and partially because really, he was still quite young. All I would change was the appointment with the one doctor because he was of no use to us and only frustrated the situation. 

[RiverTam]

I don't have an ASD diagnosis in hand, just yet, but I expect to get one this month.

I started wondering about ASD when DS1 was 4. He had poor eye contact and didn't talk much. My mother said "He's in his own world." He read at age 3 (self-taught). He had strong interests in marine animals. He did not line up toys. He did have friends and he did engage in pretend play. He hit all of his verbal milestones, but he didn't talk much. I asked our pediatrician when he went in for his 5 year check-up. He marched in, looked the pediatrician in the eye, and told her all about his new class at school and his friend Will.  He looked absolutely neurotypical. School went well that year, but his primary teacher mentioned that he had poor eye contact and some social skills deficits.  I trust our pediatrician; she has solid training in developmental pediatrics and did her residency at a top 5 pediatric hospital.

He had behavior problems all though first grade, so we took him to a psychologist in April. She gave him an IQ test and an interview and did a CARS and some assessment for ADHD. She thought he had an auditory processing problem or a language delay. We took him for a speech/language assessment and audiology workup. He was diagnosed with Mixed Expressive Receptive Language Disorder, but the SPLT thought he should be assessed further for ADHD and ASD. We took those results to our pediatrician and to our psychologist, and they agreed with the Mixed Expressive Receptive Language Disorder, but not ADHD or ASD. We started speech therapy. (I trust our psychologist. She is very knowledgeable in 2e issues.)

School went really well in 2nd grade. Speech therapy went really well. He had significant improvements. His SPLT (a new one) also diagnosed pragmatic and semantic language impairment. (There's some debate over whether all kids with semantic/pragmatic language disorder have autism, or just some of them.)

Third grade was a disaster. As DS1 became move verbal, his social skills deficits became more apparent and his behavior became worse. He was obsessed with topics before, but now he gets obsessed and he monologues. He also argues with his teachers a lot, and he didn't do that before. He also got very oppositional with a teacher's aide. (She was a bully. He tried to form an angry mob of children to fight her. There was a lot of ranting about "YOU MUST RESIST! SHE IS VICIOUS!") The (private) school requested further assessment. We took DS1 to an autism clinic at a university. They did an ADOS-G (module 3) and ADI-R and an IQ test. The ADOS and ADI-R were positive for an ASD, but I don't know which one yet. We go back on July 14.  We'll take that back to our pediatrician and our psychologist.

At this point, we're not sure what the correct label is. We are sure what his deficits are, and have been getting therapy to address the deficits. The most recent assessment was for the sake of getting another look at his problem areas, and targeting further therapy to those areas.

[Lollybrat]

My son is 7, so the diagnostic process was several years ago for us. But here are my answers.

How old was your child when YOU noticed things seemed not quite right?

We had concerns on and off during infancy. To start with all attempts at breastfeeding were a complete failure and DS even had difficulty latching onto a bottle. A few months later we noticed that DS never looked at our eyes when we talked to him, but seemed to stare at our chin or forehead. He was slow to make his motor skill milestones, such as sitting up, crawling, standing, etc. He never qualified as delayed in these areas, but was always just on the tail end of the normal range. Our big concern was his lack of language development. We knew that there is a wide range of "normal" for this, but around age 20 months and no words, we started to get concerned that something was wrong. We weren't thinking autism, but some kind of speech/language problem maybe.


How old was your child when they received an official diagnosis on the Autism Spectrum?

At 2.5 he got a provisional diagnosis of PDD-NOS. This allowed him to get services while testing and evaluation was being done. A week after he turned 3 he got his official diagnosis of PDD-NOS. At age 5 his diagnosis was changed to Autistic Disorder.

When did you first bring your concerns to your family doctor or your child's primary doctor?

I raised concerns with our doctor when DS was 21 months. I made an appointment specifically for developmental concerns. He ordered hearing tests and suggested a speech evaluation.

We moved a couple of months after and by the time we found a new doctor we were already involved in EI in our new state. The EI therapists were pressing me to get a referral to a developmental ped. So when we met our new doctor, I asked for this. He did not think that DS's delays were significant enough for a referral. However I called him ha week later and pressed the issue. Because I felt so strongly about it, the doctor agreed to send us to the dev ped.

How were your concerns addressed by this healthcare professional?

See above.


Did you take concerns to any other healthcare professionals (health unit nurses, for example)?

Before we moved, I took DS to a private SLP, as recommended by our doctor.

After we moved, we contacted Early Intervention.

How many visits did you make to a family doc or your child's primary doc before getting referred to specialists?

One visit and one phone call after.

Did you have to specifically request referrals or did the doctor suggest them?

I requested the referral, based on the EI therapists strong suggestion we get one. However, the doctor did catch a vision issue that we were unaware off and gave us a referral to the pediatric ophthalmologist at our initial visit.

Did you ever feel that your concerns were minimized by the doctor?

No. Our first doctor (pre-move) spent a lot of time talking about DS's development with me and ordered the hearing test and suggested the speech eval right away. He knew that we were planning to move and having these items already done with save us time after the move. Our new doctor (post-move), originally wanted to see what kind of progress DS made in EI, but then I called and told him that I really wanted a referral to the dev ped, he agreed to write it.

If that was your experience, did it make you less likely to bring further concerns to that doctor?

We have always had a good relationship with our doctor and his staff. Our doctor is a med-peds, so we all see him. I feel that he respects me, both as a parent and a patient.

What would you change about the timeline for how your child was diagnosed?

I would have raised concerns sooner and not moved right when we were starting the process.

[averysmomma05]

• How old was your child when YOU noticed things seemed not quite right? My daughter never slept even as a baby,was late talking etc.I was a young mother and didn't know much about kids and everytime I brought it up to her ped I was dismissed as she was fine etc. We noticed starting at infancy but around 3 when we pushed farther.
• How old was your child when they received an official diagnosis on the Autism Spectrum? We received our official diagnosis just last on July 8th.
• When did you first bring your concerns to your family doctor or your child's primary doctor? We brought our concerns up around 12 months, again at 3 when she didn't talk,again at 4 when we noticed no eye contact, etc and again last summer.
• How were your concerns addressed by this healthcare professional? We were ignored, told they ordered a evaluation but never heard anything back for a solid year which they told me was normal. Finally, back in January someone took us serious and we got in for all the evaluations.
• Did you take concerns to any other healthcare professionals (health unit nurses, for example)? We didn't see anyone other than our ped.
• How many visits did you make to a family doc or your child's primary doc before getting referred to specialists?we had alot of visits between time we were referred. We were told it was bad parenting,it was because we co-slept,she needed discipline,etc.
• Did you ever feel that your concerns were minimized by the doctor? I do feel that way and we actually just left our peds office over them not listening to our concerns and our child struggling for so long.
• If that was your experience, did it make you less likely to bring further concerns to that doctor?They made us feel horrible as parents and acted like it was just discipline issues.
• What would you change about the timeline for how your child was diagnosed? I would have been more pushy on them referring us and getting help alot sooner. I thought some of her issues were normal, or because we didn't discipline enough.

[fallenangel811]

• How old was your child when YOU noticed things seemed not quite right? - Right around a year old we noticed that he had differences, but we somewhat brushed it off until he was almost 3 and his childcare provider expressed a concern that he may be on the specturm (we NEVER mentioned our concern to this person)
• How old was your child when they received an official diagnosis on the Autism Spectrum? - Diagnosed at 5 years and 2 months old (needed to have an evaluation done by 2 different developmental pediatricians before he was diagnosed)
• When did you first bring your concerns to your family doctor or your child's primary doctor? - 3 year well child check up we took in a list of concerns and pediatrician did the MCHAT
• How were your concerns addressed by this healthcare professional? - We received a referral to a developmental pediatrician
• Did you take concerns to any other healthcare professionals (health unit nurses, for example)? - Did evaluations with the school as directed by the developmental pediatrician office
• How many visits did you make to a family doc or your child's primary doc before getting referred to specialists? - Referral was done when we first raised the concern
• Did you have to specifically request referrals or did the doctor suggest them? - Doctor made referral without us asking, just based on the information that we provided
• Did you ever feel that your concerns were minimized by the doctor? - Not by the regular pediatrician, but the developmental pediatrician dismissed our concerns and went as far as ti recommend that I be evaluated for anxiety and OCD...
• If that was your experience, did it make you less likely to bring further concerns to that doctor? - No, we don't hesitate to mention concerns to the pediatrician
• What would you change about the timeline for how your child was diagnosed? - Would have requested a referral to the second place he was evaluated (children's teaching hospital) vs. the first place.

We first noticed differences when my son was about a year old, in hindsight, we can see it a little before then even. When we first noticed these differences, we said something to a family member and they kind of brushed it off, so we didn't think too much else of it, but it was always in the back of our minds. When our childcare provider mentioned something a few days before his birthday, we we kind of astonished as we never mentioned anything to her. After my son's first evaluation (at about 3.5 years) his regular pediatrician was somewhat surprised that he wasn't diagnosed. A few months later my son was sick and needed to be seen by another practitioner in the regular pediatrician's office and that practitioner (knowing nothing about the concerns we raised nor that my son had been evaluated) asked during the appointment if he had ever been evaluated for Autism - I told the practitioner that he had been evaluated a few months prior and wasn't diagnosed...The practitioner was rather shocked and said "Not even PDD-NOS or Asperger's?" and I again said no. Other people in my sons life also noticed differences. Finally about 2 months before his 5 year well appointment I called the pediatrician and asked for another referral to a specific place (the children's teaching hospital). He saw their Autism director and was diagnosed easily with Asperger's during his first appointment. Since then we've even had instances where strangers with some ASD knowledge have picked right up on him! Recently we were shopping and a cashier picked right up on him - turned out that she was a Special Education teacher. When we told her he had Asperger's (it fit the conversation) she immediately said that was what she thought!