Saw it coming but still devastating

[u/jbxeu]

My 19 month old son was evaluated today and received an autism diagnosis. I had a feeling the past few months but was really hoping I was wrong and it was just a delay. Anyway so here I am now wanting to vent. He was diagnosed with level 2 or 3 which was even more devastating to hear. How will there future be ? Will he ever talk? Grow up and get married ? Have a job? What will he do when me and my husband are gone? I’m having a panic attack just thinking about it all.

I’m worried his twin sister will also get a diagnosis when she has her appointment on Tuesday. Overall don’t know how I’m going to survive this as my heart hurts and I feel like I’ve failed them.

I’m sorry in advance if anything I said is offensive.

[u/PennyCoppersmyth]

I know it's really hard to receive this news, and it's overwhelming, all the unanswered questions. I just want to say that you didn't fail your child in any way, and you couldn't have prevented this, as it's a genetic lottery type thing.

It's so good that you received this diagnosis early as early intervention can make a world of difference. Also, levels can and do change over time and under different circumstances, so while he may be level 2 or 3 now, he may not always need as much support.

My son didn't talk at that age, didn't receive his diagnosis until he was 7, and didn't talk much even then, but he's 19 now, has graduated high school with a modified diploma, is intelligent, conversational, is attending a transition program and is hoping to get a job soon. I do think he will be able to live on his own at some point, too.

I know it's scary and it's a lot to absorb and there's a lot to learn, but there are a ton of us out here living independent lives, even though we're on the spectrum (I'm undiagnosed but presumed). Breathe, find and talk to folks who are on the spectrum, so you can start to understand what he is dealing with so you can best support him. And try to take care of yourself, too.

[u/GreatAndromedaGalaxy → u/PennyCoppersmyth]

I second this so much!! I wish I had the money and resources available today 10 years ago. But we do what we can with what we have. Allow yourself time to process and even grieve what you thought your life would be. It doesn't mean things will be bad. It just helps you ease into what your new day to day will be like. Best of luck with everything.

[u/Korwinga → u/PennyCoppersmyth]

Also, levels can and do change over time and under different circumstances, so while he may be level 2 or 3 now, he may not always need as much support.

This is something I always try to stress about the different levels. The purpose of the different levels is just to act as shorthand to insurance about the level of support that the individual needs at this point in time. It's not (necessarily)a life long diagnosis, as your child likely will change as they get older and learn more. Especially with a diagnosis this early, the amount of possible eventual outcomes ranges the entire spectrum.

[u/MamaLoNCrew → u/Korwinga]

Especially bc he is diagnosed at such a young age.. it could absolutely change. Hope for the best, but also mentally prepare yourself in the case it doesn't. But also be grateful there are more resources these days (tho there should be more). It's ok to grieve, I'm at the end of my grieving and have now reached the acceptance stage while still having bad days, and that's ok! Just know bc you did it young you can get the therapy now, which is so amazing for your littles, that is so important, and due to that, things could change for the better including being reevaluated later and not being a level 2 or 3. Children are still developing at that age, very much so, some slower than others. I know lots of people whose children did not speak until 3 or shortly after, or do many things they weren't doing before that age. And of course even after that age.. so there is absolutely hope for things to get better! Or to a point of acceptance ❤️ the best thing is that you got him help early as possible.

[u/MamaLoNCrew → u/[deleted]]

Agreed! Where I am it was even hard to find someone to diagnose my son at age 2! Nearly impossible. And even then people said I should at least wait until 3. I truly wanted to get it early just to help cover the expense of therapy while understanding a lot can change over the next year or two.

[u/megs1784]

One thing that helped me wrap my head around things was reminding myself I am still raising the same kid I was before he was diagnosed. He didn't suddenly become this huge overwhelming uncertainty...he was still my kiddo. I was still his mom.

The days were still gonna keep coming and his autism didn't change the fact we knew our routine. I could NOT deal with the long term. I still can't. But he is now almost 20 and we got here just going through each day as it comes.

[u/GoldAugustEve]

My twins, age 3, were diagnosed with autism level 2. They’re nonverbal and they have frequent meltdowns. Life is hard. BUT they’re making tiny little progresses. It’s helped to get involved in the ABA program. I highly recommend it. The teachers (I have two: one for each twin) teach through play. If either kid is at all overwhelmed, the teacher will back off. They get plenty of breaks and have been learning skills and some new language! It’s been a game changer.

I don’t know the answers to your question. I don’t think anyone does. All you can do is love and support them, and buckle up for the bumpy journey. Oh, and take a day to yourself every week, get a family member or someone to watch your twins, if that’s possible. It’s ok to feel whatever shameful feelings you have. The feelings come and go. Take care of yourself and the best to your family.

[u/New-Day8202 → u/GoldAugustEve]

I have 3 year old twins too! I second ABA, especially esdm.

[u/ShamIAm1029]

Nothing you said was offensive. You’re a worried parent. Period. No parent wishes for their child to struggle. And unfortunately, any way you look at it, autism creates struggles for our children…even if it’s “just” existing in a society not made for them. My son turned 2 in September and was diagnosed a few weeks before his birthday. I was somewhat prepared for that, because I “knew” he was autistic in my heart, well before the official diagnosis.

When he was diagnosed, we were told to still expect a bright future for him, given the age of his diagnosis. They explained about the pathways in the brain and how (due to neuro plasticity) at this age, they are so easily changed and new ones created with therapy, and they see great success in kids who receive help early. And my child was diagnosed by a developmental pediatrician, not at an ABA center, just FYI (so she had no reason to talk up various therapies other than because she really believes in it based on research and her experience). They gave us a lot of hope. My son is a mixed level 2/1; 2 for social/communication and 1 for repetitive behaviors. I’m really trying to hold on to hope for him, but please know that there are so many people on this group that understand how you feel. It’s terrifying. But also know this: you did something that was really hard and scary by taking your child to that appointment. You could have ignored it and stuck your head in the sand and you didn’t. You did what your child needed. Be proud of that.

[u/Oniknight]

My youngest was 7 when she was diagnosed. She was functioning on many levels at 2 year old development. My youngest is now in middle school. She is nearly functioning at grade level and even though she uses medication and gets therapy/IEP support, she is doing very well and is successful in school and life skills.

Early intervention is very helpful, but you also need to be your child’s advocate and get educated by your child’s case manager on how to continue support at home. Early intervention looks like play. It builds connection. My daughter acts as unofficial welcoming committee for other kids at the center and often helps some of them come out of their shell. It’s beautiful to watch. Please understand that a disability may be real, but often with the right support, it can lead to a relatively normal life.

I myself am autistic and I live independently with my spouse and children, a pet, and a small place to live. And I have a good job too!

[u/ShamIAm1029 → u/Oniknight]

I’m not OP but thank you for sharing this perspective, from someone who is an autistic adult. I have an autistic 2 year old who is currently non verbal and seeing people like you gives us so much hope…not to minimize the struggles you have/had to get there, but still…thank you.

[u/Reyca444]

Your kids are gonna be awesome! Take some time to reframe your perspective from "will they have normal lives?" to "will they be happy and live well?" Just because things won't happen exactly the way you expected doesn't mean they can't live well. It will just look different.

[u/Abp427]

It is very overwhelming. I am an SLP and made a document for my families who recently received a diagnosis- I will try to attach it here.

Take a few days, process, and then plan! The impact of early intervention is so significant! So give yourself a HUGE pat on the back for advocating for your child, not listening to people who were telling you to wait and see, and getting a diagnosis early. It is so hard, but starting early is the best thing you can do!

Way to go mom!

There are also tons of support groups, and recently a lot of parents connect via social media (and real life) to support one another.

Take it day by day, build your network and community, and keep loving your little ones!

[u/dreamhousedwelling → u/Abp427]

Not OP, but just got a diagnosis for my son. I’d love to see this document you mentioned.

[u/h8mac4life]

19 months, so soon to worry so much. But you are right so many unanswered questions most of us have thought the same. You really just don't know. Just concentrate on helping him and getting him the support and therapy you can now. Worry about worrying later for now.

[u/BigGayNarwhal]

I understand what you mean about expected but devastating. Our daughter was “flagged” fall of 2019. Our formal evaluation was significantly delayed due to good old COVID in 2020. The eval happened August of 2020, and despite many months of early intervention services, research, and managing expectations (I was virtually certain we’d get the dx and be level 3)—I held it together the entire zoom call with the psychologist who gave us the news and full breakdown of her diagnosis and recommendations. And then the moment we hung up, I sobbed the kind of ugly, halting sobs you see where people can’t fully breathe while their body ties to aggressively cry. It was like a fucking tsunami of emotion.

It’s hard to hear your baby is going to have a hard life, and one very different from what you envisioned for them. 

To be honest—your heart will never not hurt. But it’ll hurt less. The journey of grief won’t be a straight line with an end point. It’ll be like a chaotic scribble with no start or end. But throughout all, you’ll get stronger, you’ll adjust to the new normal, and you’ll  realize that you need to embrace this new path and become comfortable with the unknowns. 

You’re going to have to relearn everything you learned about parenting, and it’ll be very up and down, but you’ll get there. Try your best to be present and appreciate the small victories, meet your child where they are, and take care of yourself. You did nothing wrong. You’re the light of their lives, and you’re going to be the one constant they have in a life that will be noisy and chaotic and overwhelming at times. You’re the best parent they could have.

Mine is 7 now, and the last 4-5 years of our Autism journey have felt like a fucking century 😂 but I can genuinely say I am content with my life, confident as a parent, and wouldn’t trade the life the we have. 

Regardless of what your other child’s outcome is—I recommend getting into early intervention ASAP if you’re stateside. Start researching speech therapists and occupational therapists. Don’t jump head first into other therapies until you’ve done a lot of reading. Think about your local support (family and friends), and look into therapy for you. Even the most well adjusted of us need it 😅

[u/Jujubytes]

We were in a very similar situation. Son got dx at 19 months level 2. I knew for a few months but of course you’re always hoping maybe you’re overreacting. Also I thought if anything he was level 1 so then the level 2 diagnosis really stung at first. It was hard news to take in as no one wants to see their kid struggle and I’m not going to lie the first week or so after was really hard for my husband and I.

Fast forward now and he’s 26 months and doing so much better! He’s been getting a lot of therapy through. Early intervention and flying through his programs. Now he is more interactive and responsive, knows crazy things like numbers up to 100, can read some words etc. he interacts with his sister and other kids, laughs all the time, and is just genuinely very happy. At 19 months he was pointing but not when asked to identify things so it was hard to assess what he knew or if his receptive language was even there. But now he responds to pretty much everything we say so we know he understands even though he is still nonverbal. My point is it DOES get better. And while it may not seem like it now, you will adapt to whatever his needs are and it’ll be okay. Take one day at a time!

[u/Fun-Negotiation5319]

My child was listed as possible asd stage 3 at age 2, he received pt, ot, and speech therapy. He graduated pt,lhes still in ot and speech. He was diagnosed stage 3 at age 3, and he's currently 4. He's extremely smart, can't talk, and is still behind a bit at a lot of learning skills, but at some thing, I swear he's a wizard. He recives aba now <always research the therapists that work directly with your children along with the center> my other child is nerotypical, but is also behind on skills due to mimicking brother, he's in speech, and just got out of ot. The earlier you get your child into therapy, the better off they will be long term. Treat your asd child like any other kid, just be mindful that you're going to be forced to learn patience if you barely had any before. Research asd, study your kid to find what will make his daily life easier.

Most of all, it's valid that you're upset by the diagnosis. It's valid to morn the life you expected. However, having an asd child is such a beautiful experience even if at times it feels like an uphill battle. Goals for your child will always be different. Don't let his pace of things discourage you from celebrating the smallest of wins. Enjoy your child as much as they will enjoy you. You got him evaluated. A bad parent wouldn't have even considered getting it checked.

[u/phdpov]

It’s hard and it’s absolutely ok (and I think, expected of normally processing individuals), to grieve the situation, the loss of the life you lost thought you’d have as a parent, as a family, and the life you envisioned for your child. No one normal wants to consider that their babies will have struggles, much less ones that are likely lifelong, BUT, as others have said, early intervention is key, and you’re at a great age to get going. I am a single mom to twin toddlers who were both diagnosed within about a month of each other. One is more involved than the other, they each have their individual challenges, and some days are fking HARD, especially doing it all alone, BUT, they are beautiful and amazing and the way their minds work is shockingly gorgeous. Both are hyperlexic and were reading books by 2.5 and both can write (one in cursive), both know numbers to very high values, both know all of their letters AND they are learning to speak two other languages. One is because I speak it with them, and the other is because they’ve literally taught themselves the alphabet (speaking and writing it) of another language by watching a kids’ video on it a few times. They are creative and sweet, and just when you find yourself really down and out about things, they’ll do or say something really amazing to remind you of how far they’ve come, and how incredibly capable and smart they are. Keep the faith, mama.