Autism spectrum?

Today I took my beloved Azulito to his paediatrician and received a referral for an autism spectrum disorder assessment.

The palpable judgement from other parents in the room whose kids were capable of sitting and waiting quietly was soul crushing as he struggled through a vast array of “symptoms”.

The wait is 6 to 9 months to even walk in the door.

I love this child. So much.

I haven’t cried like this or felt so shattered in a long time.

This chapter in life is tough. And very lonely.

18 thoughts on “Autism spectrum?

    • Thank you MLACS. He was super oppositional and dismissive at first. When I told him the dr said immediately she’d give me a referral about 2 minute into the appointment today he changed. He still thinks it’s not a real thing but he has accepts he processes the world differently. I guess that’s one small step forward? Part of the loneliness.

        • He didn’t want to accept that the little guy had speech issues either. But that’s made itself plainly obvious so we’re waiting on the outcome of a funding app for SLP therapy for that now at least. It is his way – avoid the stressor as long as possible. And then a little longer. I just ignore and press on. I hope it will get easier. I don’t know if we’ll be a team or not but I sure hope so.

        • It is his way when faced with change or stress. It almost always has to be me to get the snowball started then once it reaches avalanche proportions he will recognize it exists and he needs to get on board or out of its (and my) way or be trampled. I wish he’d go back to therapy. I understand his depression and anxiety is a big part of this response (non response) system he has. And I understand it’s hard to say my kid may have challenges outside the usual ones. And Azulito is not severe in the sense he is high functioning in many ways. But it’s a spectrum and I’d be stunned if he doesn’t test out to be on it.

  1. I wish I had some words of wisdom… Please know I’m thinking of you. And no truer words have been spoken, while raising littles is sometimes amazing, it’s also so very difficult and very lonely. Hugs 🙂

  2. Big hugs to you. Both my stepson and my oldest bio son have been diagnosed with autism. The diagnosis scared me at first, because I was worried about what it would mean for my son’s future. While I have no say in treatment for my stepson, I fought tooth and nail for help for our middle child. Two years on, he is doing incredibly well – better than I ever could have hoped for. I know it’s scary, and the waiting for the assessment is hard, but the good news is that outcomes are so much better for children who are diagnosed and given appropriate therapies early in life.

    If you need additional support to feel less alone, I highly recommend finding a local autism support group. Good luck to you all.

    • Thanks so much for writing! I fought tooth and nail to have this child, I will not stop fighting for him now. It’s already been such a struggle. I have a background in mental health and experience with more severe forms of autism than he may have so I do believe in diagnoses to get services and support. I wish I’d recognized it sooner is where I’m really struggling. He just turned 3. I have hope. It’s just so hard day to day – I am sure you can relate. Thank you for sharing your experience. It is reassuring and very kind of you to share.

  3. I was thinking of you recently and hoping for an update soon and am so sorry it isn’t happier news. I can only imagine what it must feel like to be so worried and the mix of emotions you are experiencing now. I know we are in different countries and separated by who knows how many miles, but you are not alone and I will keep you, Azulito and your family in my thoughts. Screw those other parents and their judgment, you are a loving and wonderful mother. xxx.

    • Thank you so much. You are always so heartfelt and lovely – truly, thank you.

      I’ve thought of updating but it has been hard just to breathe or find time to sleep for so long. A has a lot of safety issues (meaning he puts himself at risk a lot) so I sometimes just break down exhausted trying to keep him alive (the irony there, right?). And the LP hasn’t been on side – his MO is to say it is all fine and it will pass and he is talking at least now and we are understanding more and he’s just spirited etc. He is all those things and more. But he’s also not a neuro typical kid and better for him if I ask for help to figure out what he needs to make his way in the world and for us to reach him than to hit ignore or wait even longer to get help.

  4. I am sorry that this is even a possibility. I am praying that he does not have ASD. Is it possible that it is just ADHD? Whatever it comes up to be, know that it will be okay. I am always here for you in whatever capacity you need. Just keep praying over him and ask God to lead you and protect him.

    At every turn, curve balls keep getting thrown at you and you have knocked every single one of them out of park with integrity of spirit and strong faith. God has plans for your life and is bronzing you in the fire to make you pure gold ! I am praying with and for you. My nephew is an amazing blessing and God never fails us. Xoxo

    • Thank you. I have faith it will be okay in the end come what may. It is hard day by day. I thought for a long time he’d end up with an ADHD diagnosis and I even lined up referral resources with an expert in the area who’s a friend and fellow board member of mine last year for down the road on that front. But then when he had his most recent speech assessment done I watched through a One Way mirror and it was another perspective and I saw things I’d been overlooking and suddenly so many of his challenges made sense. I really appreciate your support. ❤️❤️❤️

  5. I’m just seeing all your latest posts. I have so much to comment on this, so please brace for a long comment and I’m so sorry for all you’re going through in advance! It really sucks that you have to wait so long for just the assessment. My SIL is going through the same thing right now with her youngest. They were told 9 months as well. But I just wanted to give you a bit hope as you wait. A was also recommended for an assessment for autism. His speech wasn’t delayed but he didn’t like to use the words I knew he had. Furthermore, he would avoid eye contact when he didn’t want to pay attention and couldn’t sit still anywhere we’d go. He was always the kid running around while every other kid was sitting calmly and paying attention. He never followed the group and was always doing his own thing. So I brought all this to the pediatrician’s attention when he was two and half. We talked about it at his two year check up and she told me to monitor it and follow up. Well then we had R and I got a bit sidetracked so it was a few months before we followed up. I ended up bringing him in for one of R’s early appts. I think it was her 4 mth check up. Anyway, the pediatrician noticed that A wasn’t making eye contact with her so she made the recommendation that we have him evaluated. We got in really quick – the one perk of the US health system. Things moved pretty quick for us. First we saw a pediatric behavioral psychologist and she said some things concerned her, but she wasn’t convinced he had autism. But having said that, she recommended we had a full eval with their autism team. It was a 4 hour long assessment and we saw, several behavioral specialists and a speech therapist. After that first eval, the early diagnosis was not autism, but he definitely needed speech therapy and they said he had some behavioral markers for ADHD but he was too young to formally diagnose. So we began speech therapy a month later and we have been doing that for just over a year now and it has being doing wonders for him in all areas of his development. Then, this past June, we had a follow up with the behavioral psychologist again and she did another full evaluation. He measured ahead on everything. At 3 1/2 he was measuring at a 4 1/2 year old to 6 year old on the various tests. She also said that she was 100% confident after seeing him again that he just didn’t meet any of the markers for any of the behavior on the spectrum for autism. After a year, I finally felt like I could breath a little easier. The soft diagnosis that we got was possibly ADHD. She still wouldn’t confirm that diagnosis because she said he’s still too young and many kids outgrow the behavioral markers he’s showing for it now.

    Lastly, we just had our one year eval from the speech therapist and he got really high scores there too. He has the vocabulary of a 6 yr old. It’s still the articulation that we have to work on. So we’re continuing with speech and also, we have him in preschool. We’ve had him in preschool since he was two. The difference in him from last year to this year is extraordinary. He still likes to run around and do his own thing a lot, but he now sits still when the teacher is doing a lesson or reading and he participates in class activities and games and he never stops talking these days. I’ve caught myself telling him we need to have quite time. I never would have had to say that a year ago because a year ago he just didn’t like to talk. So… I’m sorry, this became a very long story, but I just wanted to tell you there may be many different explanations for what’s going on with little Azuilto and speech therapy and other therapy as well as preschool can really help. I hope you get answers as quickly as possible and just know he’ll be ok no matter what. You know your kid and you know what he’s capable of. Sending you a huge hug. I hope you’re all ok! ❤️

    • P.s. at that follow up appt with the behavioral psych, she put her hand on my shoulder and said, “you have a very energetic and challenging child, but I’m watching how you interact with him and you’re doing a great job mom.” I started to cry. I really needed to hear that. I love A so much and I worry all the time that I’m screwing him up. It was so good to hear someone say that I wasn’t. So I’m saying it back to you. I have no doubt at all that you are doing a great job too momma. 😘😘

    • Thank you so much for writing this and sharing your experiences with A.

      I have been talking to a friend who is now a regulator of the psychology industry but formerly a child psychologist and expert witness in child development and abuse assessments etc about Azulito and until this spring I said I would one day ask him for a referral to get my little guy assessed for ADHD. Then the speech began to emerge in recent months (also with speech supports) but instead of diminishing with increased communication ability the behaviours increased. And continue to increase now. It may end up only being adhd (I’m confident it’s not nothing) but it really starter to look more like high functioning ASD when I put him in preschool. He can NOT handle even small groups of humans looking at or wanting to interact with him. He has multiple rigidities and while there is an OT in his team of supports she’s only there rarely (I’m asking for more but without another diagnosis than severe speech delay that he got this July I don’t know we can get more OT or a CBT specialist to help him and us). If I go with him anywhere I get “wow you have your hands full” daily. He’s amazing in so many ways. But he has challenges that in my heart and gut I know are not neurotypical. He cries having to go to the tiny preschool child care class (10-12 kids) *every single day* (its only 3 days a week now, but all 5 come Nov. 1) because he finds is so distressing to be in a space with so many humans. A teacher aide in special programming approached me at a bbq last month to ask if my wee man had a diagnosis and explained her older son was “also on the spectrum”. It felt validating and saddening at the same time. Not that I want to push my kid to pass as ‘normal’ but given how hard he finds crowds and even what most of us consider a small group, it highlighted the struggles I anticipate for him. 💔

      In short it’s harder now to believe he is not on the spectrum or has some form of neurodiversity. And that’s okay. I’m okay with it and now I just really really want help and supports because I feel really alone in digging up all my compassion when he’s melting down over every change or transition over which he isn’t in control.

      The support team he has is going to reevaluate in early November to decide if they recommend they advocate with the assessment referral for a more urgent assessment. The LP can’t handle him at all and that is a big strain on our relationship because I’m just so so so exhausted (to which I’m sure you can relate!!!).

      My psych friend says the centre to which Azulito has been referred is great and really effective so I hope hope hope we can get supports.

      As an aside I now know and had some awareness (but more recent research confirms) that my immune issues contributed to a higher risk of ASD. I would not undo things of course but I do feel a commitment to give him the best supports I can in hope he can lead his best life possible.

      Gosh parenting is *hard*.

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