This made me cry as I listened to it. My daughter was diagnosed in January of this year so we're still somewhat new to the diagnosis, but have learned so much and come so far in the past few months. For me personally, I really struggled with almost a grieving process, where I had imagined what our lives would like and what we would do, and having to realize that things are going to look significantly different from what I had imagined has been really hard, plus the feelings of guilt that arise from feeling that grief. I think seeing neurotypical families doing things I had always wished for was a big trigger for me at the start, and I really had to cut down on what social media I was consuming and follow more Autistic spaces to not feel the sting of 'what could have been' so frequently. So I highly recommend anyone do the same if that's an issue for you, I've felt so much better since monitoring my social media in that way, and as you said, looking at just the next step and not the whole staircase when it comes to the future. Thanks for another great post James!
Much needed to read this after the weekend I've had with my son's major meltdown whilst shopping because there were no Orange Ice Lollies (it's 4000 degrees out there) the looks I got from people and otherswho felt sorry for me, just made me felt uncomfortable and quite upsetting.
I've started to video and document my own personal and my son's experiences, as we are both autistic on Instagram & TikTok. It's quite daunting and still learning the process of how it works. I don't wanna be all doom and gloom, neither do I wanna be filled it positive quotes all the timea. but I just want to be as real and as honest. I know we are not alone and if I can help in any way then I'm all for it.
I completely understand where you're coming from regarding 'not being doom and gloom, but also not wanting to be positive all the time.' I get it! Autism *can* be both...at least, for me, it very often it.
What a touching and honest story! As a late-diagnosed adult, I appreciate not only your transparency but also your unconditional love for Jude. It's hard for me to read caring anecdotes like your while thinking of my own past with my parents, who are not involved in my life anymore. But I won't bring my vitriol to this place of compassion and understanding.
Wishing you and your son all the best! Maybe I'll start writing about my own autism here.
Thank you for number 8,as an autistic parent we always hear the word of before age 5..you should start doing this therapy or education etc before the age of 5,he or she should be using his first words or he can never talk,and so many other comments about his abilities..i think i needed to hear those words..thank you with all of my heart
Hi, James. Thank you for sharing these tips. My son was not diagnosed until 26, so our journey was somewhat different but the hints are still very much the same. I needed to readjust my expectations of what Allen's life would be like. It was, as others have said, a grieving process. As the parent of an adult allistic, I have found very few resources and information to assist both adult children and parents. In fact, when my husband died four years ago, there was no information in the literature to help me help him. I started writing about his grief process, which is now published here on Substack.
Bookmarked. I’ll have to read this over and over again until I get to the peaceful state you are in and beautifully describe. Thank you for sharing. So much resonates and helps me understanding I am still not there. But I know I will.
This is so helpful. Our daughter was diagnosed in July and it’s been really difficult in many ways. The online support network through different pages and accounts on Instagram has helped tremendously. Having friends that understand - so true. It helps makes things that slight bit easier. Thank you for sharing your thoughts. Can tell you are an amazing father to Jude and Tommy and I love following your life stories
This definitely made me cry as I listened. It is so difficult and it does make you feel so alone. The tough days are really tough however it gives me strength hearing you say it does get easier..there is hope! Thank you..it’s just what I needed to hear right now 🩵
This made me cry as I listened to it. My daughter was diagnosed in January of this year so we're still somewhat new to the diagnosis, but have learned so much and come so far in the past few months. For me personally, I really struggled with almost a grieving process, where I had imagined what our lives would like and what we would do, and having to realize that things are going to look significantly different from what I had imagined has been really hard, plus the feelings of guilt that arise from feeling that grief. I think seeing neurotypical families doing things I had always wished for was a big trigger for me at the start, and I really had to cut down on what social media I was consuming and follow more Autistic spaces to not feel the sting of 'what could have been' so frequently. So I highly recommend anyone do the same if that's an issue for you, I've felt so much better since monitoring my social media in that way, and as you said, looking at just the next step and not the whole staircase when it comes to the future. Thanks for another great post James!
Much needed to read this after the weekend I've had with my son's major meltdown whilst shopping because there were no Orange Ice Lollies (it's 4000 degrees out there) the looks I got from people and otherswho felt sorry for me, just made me felt uncomfortable and quite upsetting.
I've started to video and document my own personal and my son's experiences, as we are both autistic on Instagram & TikTok. It's quite daunting and still learning the process of how it works. I don't wanna be all doom and gloom, neither do I wanna be filled it positive quotes all the timea. but I just want to be as real and as honest. I know we are not alone and if I can help in any way then I'm all for it.
I completely understand where you're coming from regarding 'not being doom and gloom, but also not wanting to be positive all the time.' I get it! Autism *can* be both...at least, for me, it very often it.
What a touching and honest story! As a late-diagnosed adult, I appreciate not only your transparency but also your unconditional love for Jude. It's hard for me to read caring anecdotes like your while thinking of my own past with my parents, who are not involved in my life anymore. But I won't bring my vitriol to this place of compassion and understanding.
Wishing you and your son all the best! Maybe I'll start writing about my own autism here.
Thank you for number 8,as an autistic parent we always hear the word of before age 5..you should start doing this therapy or education etc before the age of 5,he or she should be using his first words or he can never talk,and so many other comments about his abilities..i think i needed to hear those words..thank you with all of my heart
Hi, James. Thank you for sharing these tips. My son was not diagnosed until 26, so our journey was somewhat different but the hints are still very much the same. I needed to readjust my expectations of what Allen's life would be like. It was, as others have said, a grieving process. As the parent of an adult allistic, I have found very few resources and information to assist both adult children and parents. In fact, when my husband died four years ago, there was no information in the literature to help me help him. I started writing about his grief process, which is now published here on Substack.
Bookmarked. I’ll have to read this over and over again until I get to the peaceful state you are in and beautifully describe. Thank you for sharing. So much resonates and helps me understanding I am still not there. But I know I will.
This is so helpful. Our daughter was diagnosed in July and it’s been really difficult in many ways. The online support network through different pages and accounts on Instagram has helped tremendously. Having friends that understand - so true. It helps makes things that slight bit easier. Thank you for sharing your thoughts. Can tell you are an amazing father to Jude and Tommy and I love following your life stories
This definitely made me cry as I listened. It is so difficult and it does make you feel so alone. The tough days are really tough however it gives me strength hearing you say it does get easier..there is hope! Thank you..it’s just what I needed to hear right now 🩵
Excellent list , well put thank you! You are a great dad! Really enjoyed the last point, Finding your tribe.
Thanks for this. My 15-year old was diagnosed just over a year ago. I wish I’d had this list on day 1, and am so grateful to have it today.
Excellent list!