Road to diagnosis ~ how long?

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I have some very strong suspicions that my daughter (5) has Aspergers. She was diagnosed with a speech/social delay at 24 months ~ she had the communication levels of a 15 month old at the time. She was a very, shall I say, difficult, baby. Always had to be held. Always had to be in motion. Always had to have novel interaction. As a toddler, she gained some independence but she had some pretty horrific tantrums.

She couldn't communicate (see speech delay) and oh, the frustration! She'd have tantrums and meltdowns every day as a toddler. Many of these meltdowns lasted over an hour, sometimes reaching 2 hours! It could be set off by something as simple as handing her a crayon rather than allowing her to take it from my hand. This continued until she was nearly three years old. As her speech improved, her frustration tantrums got to be less but she was always more of a handful than most of her peers.

As a preschooler, she started to adjust more. Her vocabulary took off -- rather than being delayed, she exhibited the vocabulary of a child about a year older. But her social problems really started to develop. She has always been rather "myeh" about peers, still preferred to play alongside rather than with. She preferred to speak with teachers rather than peers. She was still prone to frustration tantrums and was also quick to circumvent rules, preferring to follow the letter rather than spirit of the rule. Her preschool would give me updates on whether she had a good or a bad day because it was so touch and go with her sometimes.

She's 5 now (almost 6) and is homeschooled. She's technically a kindergartner but she's working at a 1st grade level for math. Reading's about average; she has very little interest. She's still socially quirky. She prefers to be around kids but not to play with them. She still vastly prefers adult interaction. She accepts invitations to play but doesn't initiate. She has no problems leaving a game if the rules aren't her own. She can't remember her friends' names, even after playing with them regularly for months! Her tantrums and meltdowns have become far more an issue -- she's melting down at the least provocation and it can be difficult to steer her.

She's what we call emotion blind. She smiles inappropriately a lot, even when she "recognizes" that something is sad. She tends to bring comfort items with her everywhere; if she doesn't, there will be hell to pay. She tends to "lock on" to things/ideas and it's just plain ugly when her expectations are not met. She's very sensory motivated. She craves strong, deep pressure in the form of "cuddles" to the point of disruption. She loves squishy objects and is basically always in motion and always, always talking.

She's seen a developmental pediatrician who doesn't see any ASD in her. "Too social" is what they say but I just can't believe that. Yes, she's extremely social and affectionate to people she's close to but so quirky and not reciprocal. Anyway, I'm really frustrated because I just can't believe it's "just" ADHD.

I'm curious -- for other parents with ASD children who were diagnosed later (after age 7 or , what were they like as children? How do you cope??

Some of those things could be seen as typical kid behaviors. Others seem like social anxiety, which could come from just lack of practice. You said that she's home schooled, which makes me assume that at least 95% of the time she spends with others would be with adults (correct me if I'm wrong there). If this is the case, I wouldn't be surprised that she hasn't developed the same comfort and confidence with peers that other children her age have.

All that said, you have some concerns and they are legitimate. I think your best bet is to try to get an evaluation by a developmental psychologist. The pediatrician is a good first step for this sort of thing, but they really don't specialize in diagnosing mental disorders. Since your kid seems to be a unique case, a specialist would really be necessary to help specify the problems.

Hello,

My son was diagnosed at age 7. Your daughters development sounds very familiar.
The first time someone mentioned autism was at age 5. His kindergarten teacher told me she was concerned. I still thought he was very intelligent and quirky. The school psychologist did a IQ test and confirmed he was gifted, but did not see any autism when she observed him. I went to talk to the country's leading expert in giftedness, who also warned me for misdiagnosis in gifted kids.
It took me over a year of waiting lists to get a multidisciplinary testing; by a pediatric psychiatrist, a speech therapist and a psychologist, all specialized in ASD. They did several tests: the ADOS, a pragmatic language test and several 'playing observations'. I also had to answer a lot of questions, and they looked at his development, from pregnancy to date. The tests and observation moments were spread over a period of 6-8 weeks.
This is the only way to test for ASD. You need several experts, and multiple tests and observations.

'Too social' is not an acceptable ground for ruling out ASD. I find your pediatrician's lack of knowledge disturbing.

I'm not saying your daughter had ASD, but I do read a lot of familiar things. She might be gifted and experience 'over-excitabilities' (google: Dabrowski, overexcitabilities, gifted). She might have Asperger's or ASD. Or, she might be twice exceptional and be both. Only a thorough and extended testing procedure will give you the answer.

'How do you cope'?
By talking to professionals: I see his therapist once every two months, I have regular meetings with his special need's teacher at school. I also sit down with his teacher once a week to know what's going on, to be able to prep him for excursions, to assist him with his homework and to explain to her what he struggles with and how she can best help him.
By talking and listening to other parents: here, and other places online. I follow some blogs, too. 'autism and oughtism' is very good. In my country there is also a autism hotline, where parents and people on the spectrum answer calls and give information.
By getting informed: again, here, the blogs, and books. Beware; there is a lot of BS to be found too. Don't get sucked in the dark side, there is a lot of blaming and shaming going on too.
By being selectively deaf to everyone who tells me 'I'm not strict enough', 'I shouldn't adapt the world to my kid but adapt my kid to this world', or 'I just need a husband'- and by following my gut instinct.
By trial and error, by being kind to my kid AND to myself. By not beating myself up when I make a mistake or when I feel frustrated.
By seeing the wonderfulness in my son's peculiar brain. He truly is amazing. That doesn't mean he's easy to raise. But I do allow many moments of putting the worrying on hold, simply observing him, stepping into his world and letting myself be amazed by his awesomeness .

Big hug.

my son is homeschooled and spends more quality time with kids then his schooled peers.

My son was diagnosed just before he turned 6 but it was a lot of hard work n my part and I had NO IDEA he was on the spectrum. I was seeking some sort of diagnosis for his MAJOR TANTRUMS at his age. Major, like you stated. if something didn't go his way, or the wind blew to the east instead of the west, for any reason, he would melt. He was MAJORLY oppositional and defiant. I see it now as his need to control what he cannot.
He was super smart and charming and in an ideal 1:1 setting seemed mature and years ahead of his peers. That was my issue in diagnosis, people saw him in that preferred setting and never got to see him in the real world. I started to take him and me to see a therapist, and it was that therapist who picked it up. She referred me to a child psychiatrist who diagnosed him Aspergers. He is VERY high functioning and if you were to just meet him you might not even know. But his day to day life he has issues. We work very hard to teach him how to socially interact, proper reactions to all different situations, how to manage his anxiety and his sensory issues etc...

I always knew in my gut there was something, I just didn't know what. I never gave up. Just keep going to people until someone listens. It is my experience that the high functioning kids can take years to get a diagnosis.

Hang in there you will get a diagnosis.

I second the advice to have the ADOS done. I'd also suggest finding someone who knows ASD who could observe her interacting with peers and write up her observations -- take the report with you to give to the person performing the ADOS.

As for how to manage the meltdowns, at age 5-6 it was accommodate, accommodate, accommodate. It helps to get her to a place of low stress and then start working on missing skills and coping skills a little at a time.

Thanks for your feedback everyone! At her last evaluation (June 2013), she passed the ASQ so I guess the developmental pedatrician saw no reason to continue on with the ADOS. I've called back her psych a few times when her temper tantrums/meltdowns and socialization concerns have gotten out of hand but they're always quick to assure me, "No, that's her ADHD."

She seems to be in that gray area where it could be ADHD or giftedness (she has a lot of markers for various OE's) or ASD. Or all three. There's no doubt she's not typical of her peer group. I just want to help her as best I can. We homeschool her because I don't trust our local public schools to be able to really serve either her special needs nor her gifted needs.

same reasons why I homeschool my son, and he has many friends and there are so many activities to choose from we are often overbooked with activities!

I used to post here quite regularly, but after our last ASD assessment in 2012 I stopped. I was worn out. We had known for years our son was on the spectrum, but were always told it was just anxiety and adhd. Somehow though, despite intervention for both of these in a variety of ways, our son's issues persisted. Most recently, we were admitted to the Child Psychiatry Unit for a full five week stay. During this time, multiple professionals were able to observe our son and the variety of strengths and challenges he lives with. At the end of it all, our son was finally given the ASD diagnosis. It has been a long journey. Many people told me not to give up, but I kind of did. Even the admission to the CPU was for help with dealing with our son's significant rigidity, it wasn't to get a diagnosis. I guess my message to you is the same as the one that was given to me...don't give up. It might be a frustrating journey to get to where you want to be, but if your gut tells you this is what is going on for your daughter, then keep persisting. Good luck.

cutiecrystalmom

The main benefits to having a diagnosis is to get your insurance to pay for therapy, and to get the school to provide services like speech or OT (it varies from state to state, but at least in CA if you are enrolled in an umbrella homeschool charter, the school does have to provide or pay for these services.)

Even without a diagnosis, you can still enroll your daughter in things like social skills therapy if you see a need for it. At the end of the day you focus on treating the issues you are seeing, the label is only a guide.

I second Zette in what she says about insurances. I am not from the US, but it seems to be an international thing that you only get support when you have the diagnosis. And sometimes, you don't know you needed that support three years ago, so it is better to apply for it now.
Also, as I said, it took me over a year to apply for the testing. I know this is a huge step. But knowing is always better. The label, don't worry about it so much. It is up to you to give it the meaning and the gravitas that you choose it to have. But do get a support network. A therapist, that knows your kid and you can ask for advice and someone at school are the bare minimum.