Navigating life with an autistic kid

Instacart / Eng
maddyjan

Go to company page Instacart Eng

maddyjan
3d 71 Comments

I found out my daughter is on the spectrum. She's almost 4 and can communicate in single sentences. She has trouble handling emotions. It's been rough since she turned 3. A lot of tantrums for little things. Sometimes 3- 4 a day that last > 2hrs. I'm still learning about autism and how to deal with everything but I constantly find myself thinking about my daughter's future lately. Questions like, "will she be bullied at school?"," will she have a normal life?","will she have trouble making friends?". I talk to my daughter's therapist and they usually give me a very sugar coated answer. I'm trying to collect some information from people who have level 1 autism. How has it affected your life? What kind of support structure helped you the most? What do I need to do as a parent to make sure I'm supporting my daughter the best I can? I also worry about me dying these days because that means my daughter will have to fend for herself. My close friends and family don't understand autism and don't try very hard to understand it. I don't blame them, but this leaves me in a very lonely position. I cannot trust anyone else to take care of my daughter if I die. I don't know if I sound overly dramatic, but these are the thoughts I have. I would love to hear from people who have gone through similar experiences.

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TOP 71 Comments
  • New
    sGKh35

    New

    sGKh35
    Hi! I don’t know if I’m qualified to answer this but growing up, I definitely fit the profile of someone on the spectrum. Mental health is not something people talked about where I’m from, so my mother has to navigate all these issues by herself. Unfortunately, she couldn’t help much since she did not have the info we have today… I did poorly in school from the age 6-18 because there was no support given to students like me. People are also able to notice/sense that I’m different since I was little and bullied me. It was really really tough when I was in high school.

    But as I grew older, I decided to throw myself into a foreign country to pursue tertiary education. My mom gave me her support and I picked the subject I love most and I excelled in it. I did make some good friends along the way too. Now I turned out fine, working in tech and doing well for myself.

    So I guess picking the right environment that could offer your daughter the proper support is really important. If you are in a country that does not have a strong mental health support in the education systems. I’d strongly suggest moving elsewhere…. My mom and family don’t understand autism much and you are already doing a fantastic job by being aware of it. Also, it’s important to guide her in finding her passion. You got this!
    3d 4
    • Your therapist is spot on. I worked with autistic kids when I was doing my psych degree and the changes in some of these kids from diagnosis to after a few months of intervention were drastic.

      I'm not sure if you have other kids but sometimes when parents find out about one of their kids having ASD, they can get tunnel vision and the other kids can feel left out and can start acting out to get attention.
      3d
    • Instacart / Eng
      maddyjan

      Go to company page Instacart Eng

      maddyjan
      OP
      Good to know therapy actually helps. We are already seeing a big change in her. She is more communicative now. Just needs to handle her emotions better. Thanks for the messages!
      3d
  • Amazon
    jK6vE

    Go to company page Amazon

    jK6vE
    > I talk to my daughter's therapist and they usually give me a very sugar coated answer

    to me that sounds like an instant action item to change the therapist, to one that is actually useful
    3d 2
    • Or it could also be that the therapist sees it positively and thinks there is less to worry with some work ? While I would say a 2nd opinion is fine still without looking at the full details we might be jumping the gun in saying therapist isn't good.
      3d
    • Instacart / Eng
      maddyjan

      Go to company page Instacart Eng

      maddyjan
      OP
      I think the therapist is definitely very very invested in my daughter. We get in home therapy several days and my daughter loves the entire therapy team. Just that they paint a very rosy picture when it comes to her future. I was wondering if they are not giving it to me straight. Maybd they are and it's just my anxiety that says otherwise
      3d
  • Blend
    Layoffs 🐀

    Go to company page Blend

    Layoffs 🐀
    OP I’m genuinely sorry and I hope you can give your kid the best life she can have!

    Curious for my own situation - how old was the mother?
    3d 3
    • SAP
      Tann

      Go to company page SAP

      Tann
      That's good to know, OP. To me it felt like the child's mother posting. In any case, one can only imagine what you and your wife, as parents, must be going through. If this therapist isn't satisfactory, could you try someone else? Try joining Facebook or Reddit groups on the subject, perhaps you may find better references there.

      Meanwhile, if you don't mind, would you, like Layoffs inquired, be OK to share your and your wife's age when you had your daughter? Would help us be aware. Thank you!
      3d
    • Instacart / Eng
      maddyjan

      Go to company page Instacart Eng

      maddyjan
      OP
      We were both 30 when we had her
      3d
  • Microsoft / Eng
    &cjdmc

    Go to company page Microsoft Eng

    PRE
    Latham & Watkins
    &cjdmc
    Not a doctor, don’t know if my children have autism. But, I’m on the spectrum, didn’t find out until my late 20s. I had a relatively “normal” childhood. My life hasn’t been easy, and I struggled a lot but I now live a relatively successful life. I have good days and bad days like everyone (but they tend to err on the more extremes of each side)
    My brother, on the other hand was diagnosed around 5-6 years old, and was constantly in and out of doctors/therapist offices his entire childhood. He missed school, didn’t make friends. Failed exams. He’s now nearly 30 still living with our parents and has no social life.

    So, make of that what you will but please, don’t let it define them.
    3d 2
    • Spotify
      NoyU87

      Go to company page Spotify

      NoyU87
      Thank you for sharing this. I hesitated to say something because I wanted to say that I worry that autism is over diagnosed in kids and the diagnosis may actually be harmful to some.
      3d
    • Microsoft / Eng
      &cjdmc

      Go to company page Microsoft Eng

      PRE
      Latham & Watkins
      &cjdmc
      Based on my own personal experience of it, I would rather my kids not go through what I saw my brother go through. If it becomes a problem with their development or mental state then of course I’d get professional advice, until that time I’d much prefer watching them enjoy themselves and develop naturally. Neurodiversity is not a problem unless society makes it one.
      3d
  • Stripe
    Apnz50

    Go to company page Stripe

    Apnz50
    Get a formal diagnosis and IEP when she gets to school to force teachers and others to accommodate. This can avoid punishment for meltdowns and enable alternative communication (eg flash cards for how she is feeling) when she is not in a mental state to use words. If transitions are hard the IEP could insist on foreshadowing, allow her extra time, etc. Lots of creative flexibility to help teachers help her.

    Beyond this it’s lots of patience and love. Therapy can be helpful too.
    3d 1