New autism diagnosis
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Anonymous
| We requested an early stages assessment for our 3yo to assess support for his gross motor and speech development. The report just came back, and they are telling us he falls in the autism spectrum. He is a lovely child but apparently, his interactions with peers at school are almost non-existent. This is on top of his delays. I'm just posting here to hear about families in similar situations or with more experience than us on how to embark in this adventure. |
Anonymous
| I would re-evaluate. How are his social skills with you and how long has he been attending this daycare? Bad social skills with peers could be autism, but it could also be anxiety, bullying, selective mutism, shyness, or a bad daycare fit. |
Anonymous
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Thank you. He also has other issues (echolalia and some fixation on some things) but with us and his sibling he interacts justs fine. I was surprised to see the diagnosis because I thought that more testing was required but I am also not denying the possibility that he is autisitic.
I just feel a bit loss on what this diagnosis will mean for him, academically and personally. |
Anonymous
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There is a free program called ESPA run out of Stanford University. They help you to get oriented and map out next steps. They don't get a lot of clients from this area, but for me they recommended some Maryland specific resources. Autism Speaks has an online tool kit for first 100 days after diagnosis.
ADOS-II is considered a gold standard for diagnosis, if you have any doubts, that's what a provider should use for a definitive diagnosis. Kennedy Krieger has a lot of good resources and services, and also clinical studies. Diagnosis opens a lot of doors in terms of receiving services and getting them covered by insurance. For us, the team who diagnosed in private practice helped to navigate the array of services. Also, a dev ped at Children's has been helpful in that. At this early age it's impossible to truly predict the educational trajectory. My child had a lot of similar things in his profile - echolalia (which turned out to be gestalt language learning style), hypotonia, motor planning and social skills delays. He is almost 4 now but we still don't know in regard to IQ and some of his other capabilities (and what it would mean down the line). |
Anonymous
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Hi! Thank you. Your child sounds just like mine. I don’t think they used the test you mentioned. They used the DAS-II, the Conners EC abd the ASRS questionnaire. Anyways, I’ll take a look at the Standford program and other resources you provided.
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Anonymous
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Ugh this post is hard, good for you for reaching out - my DS also received a very surprising DX right at 3 (Level 1), which came as a BIG SHOCK...it took months to get out of the funk, because I was frankly devastated. I am only a year after able to speak about this anonymously - as we have told NO ONE but his preschool and doctor. Grandparents know because we were so devastated so they knew something was off but frankly they've all blown it off like this is nothing and DS is fine - we're now in the world of too much evaluations and DXing - not helpful, so we've just kept our mouth shut. I wanted NOTHING to do with online resources, nor parent groups, nor nothing, I wanted it all to be a bad dream frankly - but if you're already exploring the post before mine has some great resources - definitely take your time (if you want of course).
We had a LENGTHY & fairly generic report from the assessor (private practice - we did not pursue early stages due to the wait times) which wrote a lot of things. Similar challenges with echolocia, in fact that was the only "symptom" which we blew off but what was a big issue was awful sleep - DS has insomnia and it has only recently gotten better (naturally frankly - with time and development perhaps) so it's been brutal in the house with the lack of sleep. DS Pedi was the one that decided its time to do an assessment - again mostly due to sleep. Since a lot of intensive SPT, that's basically subsided almost 100% - fixations are rare, but sometimes there's some repetitive behaviors, but its VERY nominal - no issues with transitions really - DS does have a hot head sometimes and may tantrum but its ebbs and flows - sometimes DS is cool as a cucumber then sometimes not at all. We did some OT but frankly stopped due to cost & time. The assessor did recommend reassessing DS before Kindergarten but I question the DX all the time - some days I accept it, some days not - the DSM-5 is bogus really...lots of threads on this if you search with others expressing the same thing. We have yet to find a dev pedi due to the long wait lists and have not managed to get off the waitlist for genetic testing which the assessor had as one of the top recommendations (why I don't know since it sounds like its still a new field)...its all a work in progress...our DS is approaching 4 & as the post before me said, it's really impossible to say what the future holds. All I can end with is that you are not alone, being lost I suppose is part of the process - we're all figuring out as parents of NT and ND kiddos... |
Anonymous
| PP, thank you for your sincere post. It is hard indeed. I remind myself that he is still the same child as yesterday. This Dx should not change my perception of him. I hope I get him the help he may need down the road… |
Anonymous
| I think many of our messages were deleted from yesterdays outage - just to say - it’s been nice hearing everyone’s perspective. |
Anonymous
| Get as many services as possible as early as possible. |
Anonymous
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OP here. Unfortunately the shutdown erased some of the messages. I’m hoping to hear about positive outlooks from people that had gone through this path with their kiddos. I don’t want this label to feel like a burden.
Thanks! |
Anonymous
It's tough, and you will be okay. You don't have to categorize it as an "adventure" or look for the silver lining, unless that helps you. My experience is that it's a hard road but it's not the label that is hard, it's the reality behind the label. I wish you good luck. |
Anonymous
We got a diagnosis at 22 months. Now at age 4 we feel are on a good track. It took us a couple of weeks to come out of the shell-shock. Then we jumped into action. If you haven’t already I’d get on lists to see a developmental pediatrician. We had early intervention, started private speech and 18 hours of weekly ABA which was done mostly in the daycare. We obviously don’t know what the future holds but our child is thriving right now. |
Anonymous
What were the symptoms PP at 22 months at the time of diagnosis? |
Anonymous
No words, lack of pointing and waving, no eye contact, no joint attention. Basically failed the whole M-CHAT. |
Anonymous
| Hi Mom…welcome to the world of asd parenting. We are a small group but we all understand what you are going through. My first recommendation is to get the ados test. Symptoms you describe are stereotypical autism traits, but sometimes those are caused by anxiety or severe adhd. Get on the list at children's or KKI for a real battery of tests. a lot of us have been in your shoes. You have such anxiety over what his future (and yours)will look like. You want a crystal ball to give you an idea of what to expect. As a mom with an asd level I son who is now approaching teens…Ive been there and STILL wish for that crystal ball. I remember reading this board every day hoping to see some sign of my son in someone elses child's description to find out what his future would look like. what is difficult, is that every child is different. Some kiddos are super easy when they are younger and you hardly see any differences. But as they get older and school and social demands increase, they struggle more. Some don’t. He may be a kid who has no behaviors throughout his childhood, but as soon as puberty hits, he is like a totally different child. I know where you are and understand you don't want to share his diagnosis bc you don’t want to out him in case his autism is extremely mild and people wont notice. If you do further testing and get confirmation, I recommend you be as open as possible with everyone. The reality is as mild as his asd might be, he will still have differences that are noticeable. Being able to have a name to explain those differences makes it SO much easier to navigate friendships and school. Most educated people understands autism these days. some more than others. Personally, I prefer people to understand that my sons differences or the odd things he may say are because of his autism, not because he is a bad behaved child or I have done a bad job parenting. And FYI…even if you don’t tell them, people see the differences and they know. Frankly it is more awkward NOT talking about it with people when there are situations his differences are obvious. You will be amazed at the support you will get and also will learn very quickly who your true friends are. I will be totally honest with you, it is not easy. You will be your sons biggest advocate and cheerleader. Best thing you can do is give him as much early intervention and therapies as possible. Especially early on it makes a huge difference and later on i life if you hit a rough patch, you wont blame yourself and winder if you has done more maybe he would not be struggling like this. This life has its hard moments. but man it has rewards that most parents will never have the opportunity to experience. |