About That Time I Was Right About Autism

Remember that time Andreas’ pediatric asthma & immunology specialist started asking me all these weird autism questions? And how I was super annoyed with him because Andreas was like, 2 years old, and I didn’t know much about autism so I brushed it off? No?

Well what about that time I had my family doctor refer him to a developmental pediatrician when he was 3 because I just knew in my gut that something wasn’t quite the same about him? No?

Or the time the developmental pediatrician agreed and referred him to the Early Childhood Development Clinic’s preschool autism assessment program thingy? Seriously? Don’t remember that? I may need to blog more.

You must remember then, when the wait for the clinic took over a year and the assessments themselves another 6 months and then the actual day of diagnoses didn’t happen until February 20, 2013 when he was five and a half years old. Oh wait. That’s today. Which means you’re all caught up.

And it also means you’re going to remember that time I was right about autism. Because today, my very quirky troubleface #2 was diagnosed with Autism Spectrum Disorder. It has been one seriously long road and I’m so relieved that the whole process is over. To be honest, for all the build up and anticipation that’s lead to today, the actual diagnoses was kind of anticlimactic.

So what? So now we’re going to talk about autism because there are a bunch of things specific to Andreas that I don’t want to repeat over and over and over again.

#1
“When you’ve met one person with autism, you’ve met one person with autism.”
What does that mean? It means autism is called a spectrum disorder because no two people with it are the same. In Andreas’ case it means he has some sensory integration/processing issues – he is oversensitive to sounds, textures, smells, and tastes. Trying new food is a big, big deal. He tends to wear the same clothes until they can be worn no more. We have a set of noise cancelling head phones for when places like church are too loud. He closes the curtains when it’s snowing or raining because he says it’s too loud. Little things like that. Stuff you wouldn’t notice unless we pointed it out, but stuff we can’t help but notice because it’s like, our job and stuff as his parents. He likes his routine and finds change challenging. If he knows change is coming or that something will be different, he does okay. Surprises are not his favorite however, unless they involve toys or chocolate or video games. When he’s overwhelmed and excited he tends to spin around and run around and make you dizzy just watching him. When he’s overwhelmed and tired he retreats and doesn’t want anything to do with anybody until he’s good and ready. Which happens every day after school. He has a limit to how much social interaction he can take at a time. His social communication is not great. He has no speech or language delays, but he doesn’t converse well and doesn’t answer questions well either. He’ll lecture you for as long as you’ll listen to him though. He doesn’t always pick up on when others are done listening and needs to be told when it’s time to stop talking. His interests are few and specific. He likes bugs, super heroes, video games, whatever his older brother is doing, and being active. Sometimes he lines up his toys instead of playing with them. Pretend play isn’t his strong suit. Often when he looks like he’s “pretending” he is really just re-enacting something he already saw. He really likes playing with our manual egg beater – the spinning just fascinates him. He notices change in other people. All of his teddy bears are girls. We don’t know why but they are absolutely not allowed to be boys. He likes rules/the way he perceives things are to be done, and we are having a real time with teaching him that his younger brother and baby sister are allowed to play and do things differently than he does. I could go on…but I will stop.

#2
That Doesn’t Sound That Bad
It’s not, actually. Most of the time he just comes off as quirky and we aren’t trying to make more of that than it is. When you put all of those things together though, is how we got the diagnoses, not just one or two of these things on their own. It’s not him only at home or only at school or only at church or only alone or only with others or only with peers or only with adults. It’s literally the whole picture of him all the time, everywhere, combined. It gets tiring when people say things like, “he seems so normal.” Or, “he’s fine, he’s just a boy.” Or, “he just needs a spanking.” Um no. To all of the above. If you know me, at all, you’d know I am actually a fairly intelligent person. I’ve done a lot of research over the last 3 years. I find it telling that every doctor who encounters him starts asking questions. You know why it’s always the doctors seeing things others miss? Because they’re trained for it. They know what they’re looking for even when they aren’t looking. What is quirky to you right now when he’s 5, could be problematic to his boss when he’s 25. The doctor sees that. Brushing it off and saying he seems fine doesn’t help. I’m sure people mean to be encouraging, but it usually is very discouraging. While we are doing our best not to make more of it than it is, it sometimes feels that others are making less of it. I’m still trying to find the balance.

#3
Speaking of Doctors…
Guess what ladies and gents? There is a very short list of people who are qualified to diagnose autism. You ready?
Doctors.
No really, the list is that short. There are professionals who can red flag a kid for developmental disorders with their eyes closed – speech therapists, speech language pathologists, occupational therapists, behavioral therapists, teachers. You know. People who work with kids every day professionally. But when it comes down to it, none of those people can (or should) make a diagnoses. Even the kinds of doctors who are making these diagnoses is a short list. My family doctor didn’t even touch it, which SHOULD tell people something. To my knowledge, these are the kinds of doctors who can tell you if your kid has autism:
psychologist
developmental pediatrician
pediatrician
pediatric neurologist
That is it folks. The evaluation process for Andreas involved speech, occupational therapy, cognitive testing, the ADOS and ADI, in home observation, at school observation, a speech path, OT, his kindergarten teacher, a psychologist and his developmental pediatrician. At the end of the day it was the psychologist and developmental ped working together to come up with the diagnoses. Now, in our case, Andreas is doing pretty darn fantastic at school this year. His teacher is outstanding and he’s thriving in her classroom. If we were to look for a diagnoses based on him in that setting alone – this year in that class with that teacher – he might not get diagnosed at all. Which makes us pretty happy, because that means school is a place where Andreas feels safe and is excelling. Can’t complain about that. That is why the doctors look at everything. I told Andreas’ teacher that if all teachers were like her, we probably wouldn’t have sought a diagnoses. But the reality is that not all teachers are created equal. And we’d rather do those assessments and have the diagnoses (if there was going to be one) NOW, before any problems arise, so that we can be ready should the need arise down the line. It’s a card in our hands that we can play when he needs us to do so. It’s a tool to help him. And I’d hate to look back and regret not having pursued this in the event he needs the help at some point, that only a diagnoses can give him.

#4
“But I’m not a doctor.”
That’s right. You are not a doctor. No letters after your name that read, ‘MD’ – no opinion. Okay. Not really, no opinion. But really – no second guessing the mom or dad or actual doctor no matter how much you disagree. Maybe it’s Andreas and you’re in the “he just needs a spanking” club. Or maybe you don’t know Andreas and it’s some other kid in your life whose mom or dad you’ve been dismissing silently (or not so silently). A little bit of listening goes a long way. Just saying. If you aren’t helping, then just…shush.

#5
Was He Vaccinated?
Because I know people wonder this, I’m going to come right out and say that all of my kids are fully vaccinated right on schedule. The vaccines have nothing to do with Andreas’ autism. We will continue to vaccinate our children. I’m not even remotely interested in debating or hearing what anybody has to say about this issue. I’ve done my research and made decisions that are right for us. You do the same for you. Everybody lives happily ever after. The end.

If we’re talking about what we think “caused” this, I’m going with genetics and that’s all I’m going to say about that.

#6
What About Asperger’s Syndrome?
We’ve talked a lot about Andreas possibly having Asperger’s. And actually that’s what it would have been classified as, BUT the whole diagnostic criteria are changing this spring and Asperger’s is being done away with, as is PDD-NOS (pervasive development disorder, not otherwise specified). All disorders on the autism spectrum are going to be called autism spectrum disorder, and given a classification of mild, moderate, or severe. Since this will be the standard within months, Andreas’ doctors are going with it now.

#7
And Your Other Kids?
Are you trying to ask me if they’re normal? No. The word you’re looking for is neurotypical. And yes, my other 3 kids are neurotypical far as we can tell. None of them are normal. I live at the circus people. No such thing as normal here.

#8
So Now What?
Now nothing. Not much is changing. We keep letting him grow and his pediatrician will keep track of him. He’s the same kid. We are really feeling like we’re cheating or something to be saying that our kid was diagnosed with autism and yet, everything is really okay. It is. If/when anything comes up we’ll deal with it. Not rocking the boat because it’s on a good course at the moment.

#9
What Does Andreas Say?
I’m so glad you asked.

Image

(That’s a quote by Sheldon from The Big Bang Theory. We sometimes call Andreas our little Sheldon. If this is not funny to you, well, too bad. I’m not sorry.)

#10
You Ran Out Of Points So You Made Up #10, Didn’t You?
Why yes, yes I did.

The End.

…aw crap. Not the end. I just feel the need to say that I am not an autism expert. I am an Andreas expert. And I don’t want this blog post to minimize the tremendous challenges that other people with autism face daily, to do things we take for granted with all of our kids – including Andreas. That thing about it being a spectrum? We are on a really privileged end of that spectrum and we know it. Now that I’ve got that guilt off my chest, carry on.

copyright (c) 2013 Jenna Pelias // all rights reserved

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27 thoughts on “About That Time I Was Right About Autism

  1. I married a man who had a diagnosis of bipolar disorder. Two years into marriage I realized he fit more into what now is the autistic spectrum. He couldn’t accept it. I tried talking to his doctor no help. He was brillant and compassionate. However due to issues I won’t go into, things changed for us. People tell me I made excuses for him . I shared info with his family and new wife, because I want only what is best for him. We continue to be friends from a distance. I would say help your son embrace his differences, encourage areas of strengths and love him to pieces. My my I bet that is what you are alreafy doing with all your children. You are blessed.

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  2. Thanks for this well written post. Our son is 12 and he has always been a bit a of a handful. This past summer it seemed that he hit puberty and wow, all of his quirkiness amped up to an extreme. He struggles so much socially that it is painful. He gets in trouble in school a lot. He has only been diagnosed w/ ADHD, also LD as well as gifted. But for a long time I think I have had this niggling feeling that there could be something more. Maybe it is time to pursue this and find out. I want to get him all the help we can. Thanks again. Your son is a lucky (blessed) kiddo to have such a supportive Mom. I know I have so much to learn about how to parent my son through what is for him (and consequently us) a difficult time.

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  3. Thanks so much for this. I read it, had a little cry, then read it again. Then I forwarded the link to a few close friends who have been supporting me on our journey with our middle son. He is 5 like your son and I have two other sons 7 and 3. Everything you have written about Andreas could have been about my middle son (minus the specific quirks, he has his own :).)

    Can I just ask you a piece of advice? As a Christian, some people who I have turned to for support have talked with me about praying for ‘healing’ for him. We have a healing room at church where people can go for prayer if they want healing. I do believe that God wants to heal and can heal although I don’t know why there are times when he doesn’t heal, but i’m comfortable with not knowing why.

    I feel very resistant to that suggestion that he might need healing, and even angry because I felt like they were saying that something is wrong with him that needs to be changed. Actually I love all the quirks that make up my son and I would go so far as to say that out of my 3 sons, he is generally the most content. I find it hard to think of anything I’d want to change about him at all.

    So my question is, have you come across suggestions of healing and how do you respond? I’m not closed to God doing amazing stuff in his life and making things that are difficult for him a bit easier. But ‘healing’ just makes me feel uncomfortable….

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    • I think you are best to trust your feelings in this. You are the expert on your child. If your son is content, I would say don’t introduce the idea that he is diseased. For our family, I like to talk about the strengths and weaknesses of each of us, myself & husband included, and start off with just accepting them. With emphasis on the kids not needing to fix us. Just modelling awareness and acceptance of where we are at and limitations. If you do go for healing prayer when your son is not particularly distressed, then you can go as a family and each get prayer for your weaknesses. Hey, I might try that. (Maybe with another family so that we don’t become “that poor, sinful family.” At least with 2 of us we could shoulder the condescension together. 😉 )

      Note of caution from my experience watching this however: God will heal, but often not how we (or the prayers) expect it. Sometimes He intervenes instantaneously and painlessly. Usually it is a slow process handled through other people like family & doctors & psychologists. Sometimes it won’t happen until heaven. I’ve found Paul’s “thorn in his flesh” and Hebrews 11 really encouraging for dealing with delayed or painful healing. The abundant life is not the painless life (or the martyr seeking life), oh Western Evangelicalism.

      PS Jenna, I love your new title for comments. (giggle, giggle)

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  4. What a great article! Our sweet boy is 13 now and he has always been a bit quirky 🙂 When he was much younger he definitely had some behaviors that concerned us. Fascinations with things like light bulbs and keys. He would want to examine everyone’s keys…it actually got to the point where if we were around other families, we had to tell him not to ask for others keys. He memorized the number of lights in our large church sanctuary, license plate numbers from MANY cars, and had a fascination with drawing the electric circuits in houses. Things that interested him were not shared by many other young children his age. But, he was socially on target and that kept the pediatrician from being too concerned. It was very manageable, and although he has outgrown many of the younger behaviors, he still amazes us with his different interests. A self taught electronic guru 🙂 We love his quirkiness and the joy he adds to our family. We know that God has a perfect plan for his life and it is so amazing to see it unfold! What great kids we have 🙂

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  5. I loved this!! All of it!! My six year old is not diagnosed on the spectrum. We had him assessed at four and they said no. But with the broad range of the spectrum, I compare it to a beach scene. If ASD is the beach with NT being the sand just above the tide and severe ASD being the depth of the ocean, my guy just barely walks the water’s edge. I am so thankful and blessed by him. His quirkiness is what makes him who he is and he is such a great kid!! God bless!!

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  6. I love your point of view! My son is four and I new from the beginning he was a little different. People always say,”he’s a boy, he’s fine!”, “he’s just a picky eater!”, ” you just have to set boundries and spank once in a while”. What a load of …….! I was right. Without his diagnosis, we would not be able to receive the many therapies we are receiving. (He has was used to be called PDD-NOS) He is such a joy, and yes he is quirky, that will never change. But maybe, I can give him the skills he needs to socialize better and succeed in life.

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  7. My son has never been diagnosed (my personal choice) but he definitely has some quirks that doctors have picked up. I can’t tell you how frustrating it is to have people tell me “be consistent”. I am, people! I know they are well meaning but it is important for people to remember that all kids are different and we can’t/shouldn’t put them in a box. And I hope I model this when it comes to other families.

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  8. I’m a teacher who can red flag, NOT diagnose! 🙂 I get those ‘little things’ that if you try to explain to someone, seem really picky. But I see things – and love to learn about new approaches and new ways to deal with those tricky little ‘things’ that when all added up, can prevent a lot of going forward if they aren’t dealt with wisely. Good post…

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  9. Thanks loservillelive for sharing your story. My son was flagged at age 5 for NLD/ASD by an educational psychologist which blindsided me, and 2 years later, we are still waiting further testing. Now I do have an MD behind my name, I’m a family doctor, so I was devastated that as a professional and a mother, I had missed “it”. But like the Grandma above, looking at the relatives, myself included: NORMAL. Yeah, he’s definitely quirky, but quirky people are my favourite! Who wants to be like everyone else? I thought I was sending this fabulous, original kid to school not a trigger of red flags.

    It’s been a good journey though, because having done my research, I suspect Justin probably IS mild ASD. Heck, I might be too. I think we’re about where it blends with neurotypical, and it’s good to understand oneself and one’s social context better. I was never normal in school either – I was exceptional – so it was very hard, but good to recognize real weakness and REALLY trust God for what I can’t protect my son from. That although I love my son deeply and have a wonderful plan for his life, ultimately, it’s not my call. And with the change in diagnostic labelling to “spectrum” across many psychiatric areas, nearly everyone will fall into one or more spectrums. Seriously! We’re all disordered, disturbed, diseased, whatever “dis” you want to call it.

    I’m the other kind of mother in that it’s the hysteria around my son that bothers me. OK, I’m not the cultural ideal; I never wanted that in the first place. I think my son would say the same. I’m waiting for God to decide and develop an ideal in both of us and I know that won’t be complete until heaven…..whatever that looks like.

    I agree with your point #3 that as a family doctor, diagnosing, confirming or dismissing Autistic Spectrum is well outside my scope of practice, and we are waiting as long as it takes for an excellent neurodevelopmental TEAM to assess my son. But for point #2 my perspective as a generalist rather than a subspecialist may be helpful. It’s hard to predict what future challenges any of our children will face. When their quirky ASD will be a hinderance and when it will be a help. Many of our quirky relatives (yes! it’s genetic) and my quirky patients found environments where they thrived. Many of our normal relatives have run into trouble. Actually, my quirky patients (I’m talking mild-moderate spectrum and well capable of attachment) who had emotional support and accepted their limits tended to do better, be higher functioning (although I find function depends on context) than normal patients. Less concerned about body image, material possessions and often accompanying debt, expecting a perfect spouse, etc. as markers of success. They learn social failure young perhaps, and that there’s more to life? I do think emotional support is key and especially mothers are key to that self-acceptance, so I hope you feel ultimately supported in what I’m writing.

    Finally, I think we live in the Christian tension of making sure all our children have support to reach their potential while ensuring finite resources also go to those more vulnerable. I hate tension. I’d rather pour the wealth of nations into my precious little people. But from the vantage point of across history and around the world, it’s really not that bad. Oh, and I’m not crazy – I had myself tested (though I’m really more of a girl Leonard 😉

    PS This ended up really long. I’ve never posted on a blog before and hope I haven’t violated blogging etiquette!

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    • There is no blog etiquette here. Last week nobody was even reading this blog so please do share your story. I love that our understanding of autism is constantly changing as more discoveries are made, and more people on the spectrum, and their caregivers, are able to find a voice. It is amazing.

      What you said about living in the tension is just so bang on. Thank you so much for your comments.

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    • Fantastic post, and one that I am sure I will ‘re read’ for encouragement when I need to. I loved what you said about trusting God to protect him from what you can’t. I think your point about the many ways in which people with ASD can actually find life easier than other people (mainly around caring less what others think and say) is evident in my 3 sons. Eldest one who doesn’t have ASD is going through a big stage of worrying what others think. I actually thank God that middle one who is ASD is so content in who he is and quite happy to be different rather than striving to be just like everyone else!

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  10. Loved this blog. Where were you when my son was 5 and getting tested? Well, probably not even born yet! My son is now 25. At age five he was diagnosed by a pediatrician as ADD. After a “bouncing off the walls” reaction to medication we took him to child psychologist (can I sing this man’s praises enough? no!). The initial thought was autism but after much tested he was found to be on the severe end of NLD. NLD shares some traits of high functioning autism but the awareness factor can cause so much stress in a kid’s life with social challenges. We got through those years with prayers, great teachers, educational assistants, and a through diagnosis. Your points were powerful especially the one about the doctor being the expert. We had our son retested at the age of ten because he was in so much distress about life, especially school life. he cannot read or write due to cognitive dysfunction. He cannot visualize in his head so every day is like a brand new day, no using yesterday’s experience to guide him. The psychologist told us that teachers are teachers. They are not trained to do what psychologists do. Because we sent our son to a private school,there was no psychologist on staff. We paid to have a psychologist meet with his teachers. Best money ever spent.
    When my son was 14 my husband and I went by to our son’s psychologist (my son refused to come) to discuss some extreme challenges. Best advice given?
    “Your son is not just a disability. He is a person with a disability and his own unique personality.”
    Like I said, my son is now 25. People gave us bad advice and some really horrible advice during his growing up years. They were not experts and we just ignored them. I am so glad we did.
    Our son now lives in England with his beautiful wife. He loves people and works with a humanitarian organization. Yes, he is a bit quirky and still has challenges. But, he is a fighter and a delight. You just have to get to know him.
    You are blessed. Your son is blessed to have you as a mom. And your family is blessed because of your tenacity and your humor. You rock. And, you made my day!

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    • I am 30, so only a few years older than your son. I’m so glad you shared your/his story, because the thing that is so hard to guess is the outcome. What kind of adult am I raising here? I don’t know! I mean, we never really know, but with autism we REALLY don’t know. Right now Andreas is doing really well, but his developmental pediatrician told me we may have more things to discuss when he hits puberty, because that’s just a rough time for everybody. So lots of guessing and waiting but mostly we just know God has his future well in hand.

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  11. love this post! Discovered it after reading the Hallowe’en post, which I also loved. As an educational assistant in an elementary school I want to commend you for seeking out a diagnosis. Good for you! This will only help your son as he progresses through school. If he were to need some extra aid in the classroom its much easier with an actual diagnosis, and much quicker. Congrats on being a Mom who, obviously knows her son VERY well, loves him no matter what and is teaching him appropriate ways to cope. What a fortunate boy to have such a supportive Mom in his corner. That alone will work wonders…
    all the best to you and your entire family!

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    • Aw wow. Thank you. It is nice to hear from educators (and ed assistants are definitely educators!) that we are doing the right thing. Andreas is in a regular class with a shared aide who supports several students. It’s good to know his school has him covered with the support if he needs it, but also that they’re challenging him as well.

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  12. Great post (loved your Halloween one, too )! Amen,amen, amen. Our oldest was diagnosed at 2 1/2 – that was almost 7 (!) years ago. I worried about the “label” but it has given him access to services we could not have had otherwise. It sounds like you have a good handle on things, so I just wanted to send you encouragement as you are on this journey. One of the best things I read early on is that “a happy family life is good therapy, too.” It helps me to remember that when we need to make service/therapy decisions. And, most importantly, God’s got this!

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  13. He is one lucky little guy to have a mom like you. I can’t wait to hear about all of his accomplishments, firsts, and mostly how much he teaches all of those around him because he is Andreas and I have no doubt that he will open eyes and change minds.

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  14. OH. MAH. GAH. This article is basically everything we are going through with our Son Desmond, like Desmond and our beliefs and our journey down to a Tee. Des is 2 and his ASD assessment is on April 15, and basically to outsiders he just seems quirky and sometimes shy, and I’ve gone back and forth in my head a million times “he’s typical, no he’s not he’s definitely on the spectrum, no he’s typical…” On and on and I feel like a crazy person trying to explain to family and friends that something is not-so-typical about Des, without sounding like I’m making a mountain out of a molehill. Anyways thank you so so much for writing about your son!

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    • I did a lot of going back and forth over the last few years, and ultimately we just had to keep going forward. It’s frustrating how much second guessing we do, but I think it helps to just listen to our guts instead of trying to make sense out of things that don’t really make sense! I hope your son’s evaluations give you answers and some relief from all the guess work.

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    • I am not a Doctor – I am a Grandma – and YES My Grandson is quirky, but looking back at the relatives…I THOUGHT THAT WAS NORMAL ! LOL
      I am proud that my grandson has a Mom who is accepting him as he is, but willing to do everything and anything so that her son grows up feeling good about himself, no matter what.

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  15. Oh my gosh! I just laughed out loud at #7. I’m so glad for you all that you have a definitive diagnosis. I’m also thankful for how you laid it out for all of us. It’s important that we all get a reminder what’s appropriate to say, ask and that really, you’re way too smart to need advice from any of us. You’re right: it is anti-climactic since you have gone with your instincts all along. I’m surprised but not really that Aspergers is being done away with…it makes sense. No two autistic kids are the same so for that…I’m glad you guys have a point to move forward from.

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    • Yeah, they are changing the whole way they diagnose people on the spectrum. It’s new to the doctor/psychologist too, but we will have the same developmental pediatrician until she retires or he turns 18, so if anything changes she’ll figure it out.

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