Dealing with limbo

[bugandbibs]

How do you guys deal with being in diagnosis limbo? With DD1 everything was so clear cut and we've been able to make sense of everything. We've spent the last year having every evaluator suggest different possibilities for DS with no real answers.

We finally saw the devolpmental pediatrician last week and her conclusion was to wait and see. DS is 4 and while I don't want to rush to judgment, I wouldn't mind ruling stuff out. He shows some characteristics of being on the spectrum, some ADHD, sensory concerns (but that isn't a stand alone diagnosis?), and he has motor delays for unknown reasons. He currently sees OT weekly and is making huge progress, but his preschool is stressing about next year.

Our school district evaluation came back as all WNL or even advanced, but his OT has referred him for a speech evaluation. The devolpmental pediatrician has suggested small group therapy to address some of the school's concerns about behavior. His PT says "do not believe anyone who says he is autistic" and his OT thinks he's on the spectrum. His regular pediatrician thinks he is bored at school and slower to mature (especially as it relates to his older sisters who mother him a lot). I just want my son to continue to be the happy, sweet boy he is. Right now he loves school, but I worry about what will happen when he starts kindergarten in a year. Sorry for the brain dump- I just need some outside perspective.

[auntie]

Is your older child on spectrum?

[waverly]

I don’t have personal experience with an autism or ADHD diagnosis. But my son does have sensory and motor delays. I haven’t been given an exact reason why but I have some guesses, low birth weight and issues in the womb for the motor delays. OT should be able to diagnosis SPD I thought? Even if they can’t diagnose they can give good information on the sensory. We did 9 months of OT and PT and he has mostly caught up.

I know a lot of kids who are borderline take longer to diagnose. It’s a good thing since they are not severe, but can be harder in terms of getting a diagnosis. Their differences may present themselves at later times when their peers take a cognitive jump and they dont go with them.

[bugandbibs]

Jun 26, 2018 17:04:09 GMT -5 auntie said:

Is your older child on spectrum?

No, she is not but she is also adopted and they aren't genetically related. That's another factor that his devolpmental pediatrician brought up. Since no one in our family has been diagnosed on the spectrum, she really wants to be cautious. I personally believe that MH's grandmother is on the spectrum, but she's in her 70s and hasn't been evaluated.

[auntie]

I understand the frustration of limbo. BTDT. I was pretty certain something was up with my kid when he was about 3, but was unable to get an actual dx on him until he was nearly 7 and even then it wasn't truly complete until a year later.


For some kids getting to a place where a dx can be confirmed or R/O can take some time when the issues are subtle or more than one thing is going on because behaviors/symptoms don't fall neatly into the checklist. It's hard to be in this place where your gut is telling you one thing and your team- physicians, educators, therapists are like the 10 Blind Men and the Elephant each making guesses based on the small piece they know. It well outside their wheelhouse for a PT, OT or even PCP to offer up an opinion about whether a kid is on spectrum or not although a professional who works with a lot of kids is often very good at recognizing ASD in kids they come across. The first person who recognized DS's dx as a possibility was a MSW who evaluated DS in kindie. My ex-BIL's younger son was identified by the EI therapist who was working with his older brother who had global delays. (Older son is an abstinence baby born to my niece and adopted by her dad and and his 3rd wife- boys are about 14 month apart) The great irony, was that mom was working as an EI developmental evaluator at the time.


We also had the frustration of conflicting opinions. Early on, DS's pedi blew me off. DS fits the profile of Asperger's Syndrome- so ridiculously early speech, bright, most gross motor milestones met within the usual timeframe, mild sensory stuff, and advanced fine motor skills. He did not have the tantrums, which are not diagnostic, but are very common with his dx. At four, the pedi told me the only thing wrong with DS was that he was the "bright and very valued child of older parents". At six, I asked the pedi for a referral to the Autism Clinic and he made me a bet that DS did not have ASD. He later apologized for missing it; we went through DS's sparse medical records (he was a heathy kid) and there were a couple of clues- most notably his high tolerance for pain. Because DS didn't have any delays that EI or the LEA would have noted, he wasn't seen by OTs, PTs or SLPs who might have picked up on something. A couple teachers suggested ADHD might be in his future, but most felt he was a little immature- a boy, an only, a summer baby- he'd likely catch up with time. LOL, I'm still waiting.


And then there are those kids who are clearly not fully NT but whose symptoms and behaviors don't quite rise to the level of a diagnostic threshold. A lot of these kids are siblings/cousins of kids who are on spectrum which is why I asked. Your son could be one of these kids who will be a little different, quirky and have to work harder to compensate. Your DH's grandmother might also be one of those "close but no cigar" individuals. I have a cousin who was dx'd after my own DS was, he has a niece with ASD. Looking back, there are a lot of quirky people on both my and DH's family tree. Some clinicians would offer a working dx of PDD-Nos to people who didn't quite have enough difference to get an Autism or Asperger's dx 20 years ago but before that this wasn't on anybody's radar. This is no longer an option.


Four is very young. It could take a couple of years to shake out. Part of the problem is that ASD presents as a developmental delay of social and emotional maturity that is about 1/3 to 1/2 the person's chronological age regardless of IQ. When a four presents with behavior that is closer to a young three, it's hard to determine if that's just late bloomer or something more. It's easier to see the delay as the child gets older- the ten who acts six for instance.


Another piece is that he's at an age where the instruments used for evaluations are not as rigorous as they are for 6+. Many doctors will not even consider an ADHD dx at four unless the child's behaviors are so extreme as to be life-threatening. The better scales for ADHD and ASD as it relates to communication aren't even normed until age 6. Part of the problem, too, is that most dev pedis don't have the opportunity to observe the child in his natural habitat- a good psychologist who observes a child in a classroom and playground would bring a lot to the party. Sometimes a school district will have their school psych do an observation as part of the evaluation but they don't generally have the training a clinical psych has. (most school psychologists are really psychologists- they're professionals trained to administer assessments and interpret them but they haven't done the clinical work)



This might be a situation where you can work on what you know and re-visit the diagnostic piece when he's older and expectations for skills and behavior are higher.

[funchicken]

We were in limbo for a long time (DD1 just got an ASD diagnosis at age 10), and we've gotten a lot of confusing and conflicting information from teachers and professionals over the years. I agree with Auntie that for now, you probably just have to work on what you know and do your best to understand your DS. Why is the preschool so worried about next year? Do you know who his teacher is going to be?

I found the book "The Explosive Child" to be really helpful in dealing with behavior issues, and the Social Thinking program is great because it doesn't focus on the diagnosis, it focuses on understanding social cognitive challenges and provides a framework for figuring out what your child's strengths and weaknesses are.

Hang in there

[sahara78]

Sorry you’re in limbo still. My DD was diagnosed with ASD right before she turned five. I don’t think she would have qualified for a diagnosis a year earlier, as more symptoms emerged (delayed echolalia, social deficits) over that year. It sucks to know something is off, but not know what it is for certain. DD’s pediatrician suggested that she was “just shy.” Kind of frustrating, but I’m glad I pursued testing despite her doubts.

Does your DS start K in the fall or in 2019?

[bugandbibs]

Jun 27, 2018 10:47:16 GMT -5 funchicken said:

We were in limbo for a long time (DD1 just got an ASD diagnosis at age 10), and we've gotten a lot of confusing and conflicting information from teachers and professionals over the years. I agree with Auntie that for now, you probably just have to work on what you know and do your best to understand your DS. Why is the preschool so worried about next year? Do you know who his teacher is going to be?

I found the book "The Explosive Child" to be really helpful in dealing with behavior issues, and the Social Thinking program is great because it doesn't focus on the diagnosis, it focuses on understanding social cognitive challenges and provides a framework for figuring out what your child's strengths and weaknesses are.

Hang in there

DS was in a class of 8 children (3/4 year olds) and is moving to a class of 15 kids (4/5 year olds). They are worried that he will need more direct attention to self manage and stay on task than the classroom is set up for (2 adults for 15 kids). I just checked out The Explosive Child, but I haven't started reading it yet.

[bugandbibs]

Jun 27, 2018 19:13:29 GMT -5 sahara78 said:

Sorry you’re in limbo still. My DD was diagnosed with ASD right before she turned five. I don’t think she would have qualified for a diagnosis a year earlier, as more symptoms emerged (delayed echolalia, social deficits) over that year. It sucks to know something is off, but not know what it is for certain. DD’s pediatrician suggested that she was “just shy.” Kind of frustrating, but I’m glad I pursued testing despite her doubts.

Does your DS start K in the fall or in 2019?

He starts K in fall 2019. He's still really young which is part of MH's frustration and why he thinks I'm over reacting.