Introduction, pregnant and ASD diagnosis — The Bump
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Introduction, pregnant and ASD diagnosis

I debated on whether to post on here... But i need some encouragement and understanding from people who understand.

I am currently 23 weeks pregnant with my second boy. My DS1 is 25 months old and last week we had him evaluated, based on his delayed speech and his tendency to ignore people. We left with a diagnosis. He is mildly on the Autism Spectrum. Its hard describe my emotions this past week. I cried all day the day after the diagnosis, until i was physically ill. my anxiety level went through the roof. But every day is better as i process this. What does this mean for my boy? What do i need to do on a day to day basis differently that will help him get the best start he can? We already do speech and OT and have an excellent relationship with our Early Intervention coordinator. 
I think the most frustrating part is my confidence is shaken. Ive always been such a confident mom and now I'm just overwhelmed. (I'm sure pregnancy hormones are not helping)
Also, although we've received an outpouring of encouragement from our family and friends, I'm trying to ignore comments like "oh, kids on the spectrum don't like touched, or don't like change" etc.... Well like they say "if you've met one person with autism, you've met one person with autism" My son is very young, he loves snuggles and playing, he loves music and looking at books. He has a tendency to ignore you when you call his name and ignore people in general, but there are so many things he does that are not spectrum related. I'm not saying that to argue with the diagnosis, but it does make it hard to accept. and it makes me feel like i have to change everything iv imagined for my little boy for the future!
We are due to have our second boy in april. Im not worried how DS will do with the baby, but I'm worried how i will balance the needs of a newborn and the needs of a 2 1/2 year old on the spectrum. 

Any encouragement/ advice would be most welcome! thank you for reading :)

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Re: Introduction, pregnant and ASD diagnosis

  • First off, sorry you are hit with this while pregnant. I imagine the hormones don't help lol! I found the first year hard and wavered between acceptance and disbelief. I think it's normal. There are many misconceptions about autism. Get a good book, I liked the moms guide to autism. Even have extended family read some books to help with those misconceptions. Good luck to you!
    Olivia Kate is almost 4!
    Diagnosed with autism this year and doing great!
  • MirandaHobbesMirandaHobbes
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    edited December 2013

    Welcome to the board. There's a lot of great encouragement and advice on this board! My son was diagnosed by EI folks at about 20 months old, and at age 3 pdd-nos by a dev. pedi. When the school district handed us the diagnosis I had a lot of mixed feelings. I cried when they told me, but for the next year I was pretty much in denial. I didn't cry, because my son didn't appear atypical (to me). Like you said, he was happy and loved snuggling and books and I just didn't see what the big deal was. So for now, just remember to take a deep breath and continue on your path with EI. We did everything they told us to do, even though I wasn't sure if it was working. Regardless DS came along nicely, and was speaking in short sentences by 3. Once he was 3 I could see more of the "stereotypical" autistic features emerge. That's when we were more at peace with the diagnosis, and we reached out to a developmental ped. That was hard in a different way- I could more clearly see the areas he struggled with.

    It was/is scary reading all the stories of what it means to have autism as a middle schooler, teenager, or adult. I can't say with any degree of certainty where my DS will be at that age. All you can do is focus on all the positives. DS is in mainstream kindy this year- I remember when he was diagnosed I thought that so long as he could make it in mainstream kindy, he'd be fine. Not so much "fine", although I should count my blessings that we've come this far. He is considered high functioning, but he still requires an aide almost all of the time to keep him on task. He is very bright, and academically is at or above average, but his emotional regulation is very delayed. He is only mildly interested in other kids. This wouldn't seem like such a big deal, but the social implications are huge. Like the other day he was trying to play hide and seek with some kids. But he wasn't following the rules, peeking where the kids were hiding, coming out from his hiding spot too soon. The kids got really annoyed and pretty soon they didn't want to play with him anymore. It's obvious, unfortunately, that he's a "different" kid, although for the most part the kids seem to be very kind to him, always saying "hi" even when DS won't say "hi" back.

    Sorry, I don't tell you this to bum you out. If you saw my 5yo DS today you probably wouldn't know he was on the spectrum unless you hung out with him for an hour. Others you may notice right away, still others you would never know! I was so clueless when we started out. I blurted out when I heard his diagnosis "So he'll never be a lawyer?!!!" (DH and I are both lawyers). They actually laughed at me and said of course he can be a lawyer! Another evaluator told me her husband teachers AP Chemistry and he has a son with ASD in his class- the only accomodation he needs is a quiet place to take a test. As with any kid, you just don't know what to expect. Even without an ASD diagnosis DS may have never been a lawyer, or been in AP Chemistry. I think its safe to say he's going to have a rough time socially, and is going to have to work hard to make and keep friends. I try to remain positive about college and future employment, even though those statistics are pretty bleak.

    So yes, there's probably a bit of an adjustment to be made in your future plans for your son, and you have to allow yourself time to grieve that. You're lucky to have supportive family! My family is still in the denial camp. If I could have done one thing differently I probably would have gone out of my way to get DS engaged with other typical children more often. He was in daycare fulltime, but my denial would have dissipated if I had spent more time observing DS's differences with other kids. Looking back at videos and such on autism speaks, it's so obvious all of DS's little quirks that I never noticed before. Like why did I think it was normal that at 18 months the only thing he wanted to play with was lights or pop cans?!

    Good luck on your pregnancy and keep your head up!

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  • Welcome! We are new to the diagnosis as well. Like your son, my daughter is very affectionate with familiar people, loves to play and read books. She also has other features that are very atypical of kids on the spectrum--she pretend plays, does naughty things to get my attention, is not rigid, doesn't have over the top tantrums, uses language to communicate, has joint attention and social play in preferred activities, etc. pretty much everyone who has ever worked with her professionally has not thought autism. we had her evaluated at your sons age and she did well, no dx and a see you in six months. in this past year she definitely added more flags for autism, like learning the whole alphabet upper and lower case by sight and beginning to learn to read without formal instruction. Shes also developed more anxiety around unfamiliar adults--she tends to cry now vs just ignoring them. She was tested and received a diagnosis and the criteria they used were things most wouldn't notice, like she wouldn't sustain eye contact for as long as a typical kid and looked away when she smiled or cried. I'm currently reading a good book on autism (an early start for your child with autism) and so much more resonates with me than i thought would. My kiddo prefers objects to people and she's a very visual learner. She might not perfectly fit but I don't think any kid really does and I see how much her individual symptoms impact her ability to learn.
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  • Welcome! I was 7 months pregnant with my second son when my first son was diagnosed with autism at 21 months. I definitely understand how hard it is to recieve this diagnosis especially while expecting a new baby. I have just had to take it one day at a time. It has definitely been a really hard year. It's hard to say if you need to do more therapy then you already are, did the diagnosing doctor have any more suggestions? I know for my son, when he was diagnosed he was still non verbal and getting the ASD diagnosis helped me realize he was going to need significantly more therapy to learn to talk. I was able to find a university based program that has literally changed his life in terms of communication though he is still very delayed. We are also adding ABA in the spring which is considered the good standard for autism treatment. Also, the closer my son gets to 3 the more atypical he is becoming. Socially he is very different from a typical 2.5 year old and a lot of his speech is echolalia. Some of his therapists used to doubt his diagnosis but none of them do now. He is very affectionate with preferred adults, loves reading and music but none of that changes the fact that he has autism. It's also good to be aware that your new little boy is going to be considered a high risk infant because of your order sons diagnosis. Our pediatrician is keeping a very close eye on our second son and unfortunately he is also starting to show delays, only time will tell if he will also have autism. Good luck with everything! Please let me know if you have any questions!

    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
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  • Welcome and creepy Internet hugs to you!

    See tickers. Similar situation, although my older kiddo was Dx'd HFA the day before he turned two and we had time to process before deciding to have another. 

    Depending on where you live, the Dx could open the door to many more hours of early intervention. In my state, that occurs through specialty service providers subcontracted through EI who do ABA, Floortime, or a hybrid of the two for up to 30 hours a week. What did the clinician recommend? 

    I found it extremely helpful to talk to local parents of kids on the spectrum. It took me a while to seek them out because I was so focused on getting services going (we weren't in EI prior to Dx), but they've helped keep me sane. They're an invaluable resource when navigating providers. It's also always a relief to not have to explain a damn thing, unlike with the well-meaning friends and relatives.

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  • Thank you all for your thoughts and encouragement! Its good to know that Im not alone! Im trying like all of you to process what this'll means for my son so that I'm not in denial or an emotional wreck... i can't take care of myself or my son like that! 
    Im trying to remain positive and hopeful and do what i can now to make things easier on my son later. that can be a little overwhelming on a day to day basis... for example, he loves sitting and playing... how often do i interrupt and try to engage him? i limit tv but is a little still ok? how many of his behaviors are normal two year old behaviors?  (i know you all can't answer that... its just a question thats on my mind!) 

    like they say "if you've met one child with autism, you've met one child with autism"... i prefer to hold onto hope that he will thrive and grow and learn to manage the things that point to the spectrum as he grows and learns! 

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  • Right now She suggested continuing with Speech and OT as well as our in home Early Development lady. she suggest possibly increasing visits and she mentioned a special preschool, but i don't know if that was meant for once he turned 3 or now? ill be talking with our Early Intervention Coordinator (who i love :) ) to see what her thought our! I don't want to do "too much" and overwhelm him (or, frankly, myself) but i also want to do everything i can to give him the best start! 

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