Update: Which parent should go to assessment?

[doragirl]

Hi folks,

It has been about a month since I last posted and I thought it would be worth an update. I can see this forum becoming more valuable as I navigate the next little bit of life.

I ended up taking my son to the assessment. My husband coincidentally had an appointment scheduled with his health care provider (for himself) which I think may have included some of his frustrations. He never mentioned any further word about it to me. So at least it was not stressful.

My son did amazing at the ADOS. His imaginative play is exceptional. He can communicate well, though is significantly speech impaired. He can make choices clearly. Most importantly, I can confirm that the boy who showed up to engage in the assessment was a fair and accurate representation of my son. He did not behave any differently than he does on a day to day basis.

Despite his engagement in the assessment, he does meet the DSM-5 criteria for ASD.

I know the label does not change who my son is, and I love him dearly. He is the most loving and affectionate little guy. I would not change him for the world, but I am worried about how the world will see him and treat him. I am worried about making friends and having invitations to birthday parties. I am worried about his happiness and how he will care for himself when I am gone. I know I am underestimating his ability and his strengths, of which he has many. I am just scared for the future, which I know will be hard for him and I hope to be able to lessen the challenges he will have to endure growing up in a world that is not built for beautiful brains like his.

Anyway, I thought I owed it to you to update as this was a very helpful place for me leading up to the assessment. I am in the process of adding more supports to his care team to try and prepare him as best I can for full time school next fall.

Thank you to all you kind folks.

 

[Magna]

Hello, Mom. I'm Dad to an ASD boy. First I want to thank you for being the wonderful parent that you are to your son in loving him for who he is. I feel the same about my son. I often say to my wife that I can not imagine our lives without our youngest. I thank you because I have a relative who also has a child with ASD and it saddens me to no end that this relative has done so much to try to change their child and considered the diagnosis of ASD to be devastating news. This relative among other things has insisted on mainstream classroom study for their child, ignoring their child's tears and sobbing from the stress of being in classes that are simply too far ahead of the child's pace.

I too have fears like you do, but one of my main missions in my life is to be there for our son, to teach him about the world, to praise and cheer him on for his strengths and help him as patiently as I can with areas he needs to work on. I try to focus on the present and try to minimize my worry for his future. The world would benefit from knowing him and I'm sure it's the same for your little guy.

Again, thanks for being a great mom.

From an autistic dad with an autistic son.

 

[Alexej]

Thank you to all you kind folks.

Also thank you for the reply. It is always good to know how a story pans out.

Glad you got the diagnosis, which may help both you (as parents) and him to contextualise what is going on.
I hope you enjoy the journey with autism - it has its ups and downs; but now you have a formal context into which to put things.

 

[Stuttermabolur]

Despite his engagement in the assessment, he does meet the DSM-5 criteria for ASD.

This sentence seems a bit strange for me. Isn't it because of his engagement that he meets the criteria? They wouldn't have been able to accurately assess him if he wasn't engaged.

I know the label does not change who my son is, and I love him dearly. He is the most loving and affectionate little guy. I would not change him for the world, but I am worried about how the world will see him and treat him. I am worried about making friends and having invitations to birthday parties. I am worried about his happiness and how he will care for himself when I am gone. I know I am underestimating his ability and his strengths, of which he has many. I am just scared for the future, which I know will be hard for him and I hope to be able to lessen the challenges he will have to endure growing up in a world that is not built for beautiful brains like his.

While I did not get officially diagnosed as a child (An ADHD assessment was suggested by a teacher when I was 5 because I didn't connect with other kids nor show emotions. I suspect she didn't know about Aspergers then), my parents had the same worries about me as I was definitely "different". They were both party people with lots of friends who socialized easily and never had to experience bullying or isolation, so they felt anxious at how I wasn't making friends and mostly spent my time reading or doing other stuff by myself. However, my mother got a great piece of advice when I was around 10 which I think you should keep in mind as well: If I like being by myself and don't care about typical social trappings, then she should let me be happy, instead of trying to push me into being like herself or more "typical" people even though I'm clearly not interested.

I see the same worry in your response. You mention invitations to birthday parties and your son taking care of himself. I can tell you that I didn't get invited to birthday parties after maybe 11 (not hyperbole. I'm having trouble thinking of a single one outside of my family), but I honestly didn't mind and haven't made an event out of my birthday for years now. I just don't like parties, especially if it's with people I don't connect with. Taking care of himself is ultimately for your son to figure out and for you to help him with. Sure, it will be difficult as being a parent always is, but the same goes for all children, and it's something most parents worry about as well. Of course his difficulties will likely be different, but that just mean they require different support and solutions.

My biggest piece of advice (echoing the one my mother received) is to observe what brings him joy and how he thinks, and try not to carry too many biases or preconceptions about what he should like or how you expect him to behave. Of course you should teach him and spend time with him, but he might show affection and understanding in a different way than other children. I'm glad that it seems he received an accurate assessment and you seem like a caring parent. I wish you and your son the best of luck in the future.

 

[Rodafina]

Hi @doragirl
Thanks for the update. I'm glad things are progressing with your son and you are ready to have his back and support him as he grows.

I ended up taking my son to the assessment. My husband coincidentally had an appointment scheduled with his health care provider (for himself) which I think may have included some of his frustrations. He never mentioned any further word about it to me. So at least it was not stressful.

I just wanted to offer the opinion that it may be wise to keep an eye on this dynamic with your husband. I find it somewhat odd that after all that fuss he made about being the one who should take your son to the assessment, the existence of a doctor's appointment was enough to change his mind. If he really felt so strongly that it was in your son's best interest for him to take him to the assessment, then he would have likely made arrangements to be available for it. When it was convenient for him to go to a scheduled doctor's appointment, all of a sudden, it was okay for you to be the one, no further questions asked.

I just wonder how much your husband is more concerned about controlling the family rather than the actual well being of your son. I bring it up because this will be important as your son gets older. He will be able to figure you two out pretty quickly and if he is getting conflicting messages about who he is, who supports him and how, it could really confuse him.

I don't want to stomp on your bit of hope here and I honor the efforts and the care you are providing to your son. I would just caution you to be mindful of the whole dynamic at home because we can internalize things in our environment very easily.

Much compassion and respect toward you in your journey through motherhood.

 

[doragirl]

Hi @doragirl
Thanks for the update. I'm glad things are progressing with your son and you are ready to have his back and support him as he grows.



I just wanted to offer the opinion that it may be wise to keep an eye on this dynamic with your husband. I find it somewhat odd that after all that fuss he made about being the one who should take your son to the assessment, the existence of a doctor's appointment was enough to change his mind. If he really felt so strongly that it was in your son's best interest for him to take him to the assessment, then he would have likely made arrangements to be available for it. When it was convenient for him to go to a scheduled doctor's appointment, all of a sudden, it was okay for you to be the one, no further questions asked.

I just wonder how much your husband is more concerned about controlling the family rather than the actual well being of your son. I bring it up because this will be important as your son gets older. He will be able to figure you two out pretty quickly and if he is getting conflicting messages about who he is, who supports him and how, it could really confuse him.

I don't want to stomp on your bit of hope here and I honor the efforts and the care you are providing to your son. I would just caution you to be mindful of the whole dynamic at home because we can internalize things in our environment very easily.

Much compassion and respect toward you in your journey through motherhood.

Thank you for your thoughts and kind words.

I have withheld some details as I am trying to protect identities. What I can say is that my husband is also neurodivergent and was late diagnosed as an adult. It has been hard and he is working with a great psychologist. I suspect they spoke about the issue during a regularly scheduled session and it was resolved in my husband's mind... or he could have simply forgotten given his brilliant and forgetful brain.

 

[doragirl]

This sentence seems a bit strange for me. Isn't it because of his engagement that he meets the criteria? They wouldn't have been able to accurately assess him if he wasn't engaged.



While I did not get officially diagnosed as a child (An ADHD assessment was suggested by a teacher when I was 5 because I didn't connect with other kids nor show emotions. I suspect she didn't know about Aspergers then), my parents had the same worries about me as I was definitely "different". They were both party people with lots of friends who socialized easily and never had to experience bullying or isolation, so they felt anxious at how I wasn't making friends and mostly spent my time reading or doing other stuff by myself. However, my mother got a great piece of advice when I was around 10 which I think you should keep in mind as well: If I like being by myself and don't care about typical social trappings, then she should let me be happy, instead of trying to push me into being like herself or more "typical" people even though I'm clearly not interested.

I see the same worry in your response. You mention invitations to birthday parties and your son taking care of himself. I can tell you that I didn't get invited to birthday parties after maybe 11 (not hyperbole. I'm having trouble thinking of a single one outside of my family), but I honestly didn't mind and haven't made an event out of my birthday for years now. I just don't like parties, especially if it's with people I don't connect with. Taking care of himself is ultimately for your son to figure out and for you to help him with. Sure, it will be difficult as being a parent always is, but the same goes for all children, and it's something most parents worry about as well. Of course his difficulties will likely be different, but that just mean they require different support and solutions.

My biggest piece of advice (echoing the one my mother received) is to observe what brings him joy and how he thinks, and try not to carry too many biases or preconceptions about what he should like or how you expect him to behave. Of course you should teach him and spend time with him, but he might show affection and understanding in a different way than other children. I'm glad that it seems he received an accurate assessment and you seem like a caring parent. I wish you and your son the best of luck in the future.

Thank you so much for your thoughtful response.

By engagement, what I intended with my words was that despite my son's excellent response to the tasks, and carrying them out to the letter, he still met the criteria for diagnosis.

I thank you for sharing the advice that your mother was given. I will be taking it to heart. Certainly, I will not be forcing my son to do anything he does not wish to do, provided there isn't a negative consequence to not doing it (i.e. wearing a seatbelt, getting a vaccine, etc.).

I think what it boils down to is that I simply want my son to be happy. If he is happy having no friends, I am okay with that! I am probably equating not having friends to being unhappy, which you are correct, may not be the case at all. So provided I can support him with achieving what he wants to do and he is happy, that is all I could ask for.

 

[Rodafina]

Thank you for your thoughts and kind words.

I have withheld some details as I am trying to protect identities. What I can say is that my husband is also neurodivergent and was late diagnosed as an adult. It has been hard and he is working with a great psychologist. I suspect they spoke about the issue during a regularly scheduled session and it was resolved in my husband's mind... or he could have simply forgotten given his brilliant and forgetful brain.

I understand better now. Thank you for offering more details. I appreciate that your situation at home is complex, just like the rest of our lives here on the forum, and you seem to be doing your absolute best to navigate this with care.

 

[Neonatal RRT]

@doragirl,...just some thoughts to keep things in perspective.

For context, I am 56,...and have worked with autistic children at one of the largest children's hospitals in the US for 37 years. Yes,...if you're doing the math,...I started working there at 19. I have been married since 1987. I raised two wonderful boys,...very proud of them,...both successful engineers and financially secure.

That said, when I explain to parents of autistic children, who I am, my diagnosis,...it gives parents some perspective and hope. Sometimes the difference between a 6 year old autistic child and a 56 year old autistic adult is "light years" in terms of knowledge, self-awareness, maturity, social skills, etc.

Sure, there are things I am still learning about myself,...I know there are delays,...I have my difficulties,...but I keep moving forward. Every person with autism is different,...the degree of neurodiversity is much broader within our own community than it is within the neurotypical population. You can be with a parent group of 20,...each describing their child,...and you may be sitting back going,..."My child doesn't act like that."...and vice-versa.

I was raised in a generation where I had "behavior issues" and was punished,...there was no such thing as "high functioning autism" or "Asperger's condition" or ASD-1. My parents raised me to be strong, independent, and with a strong work ethic. Excuses were not accepted. Perfection was expected. Now, I think my parents could have done better with their methods, in retrospect,...but the end result has left me pretty well off,...relatively speaking. My parents had this "skillful neglect" approach down pat. If I wanted something,...I had to work to get it. If you don't know how to do something,...learn. That has been my life,...respiratory therapist, teacher, electrician, welder, engine builder, construction, researcher, computer programming,...some formal education,...some self taught. The point being,...from a parenting perspective,...it may be useful to put forth an extra effort in this direction, earlier vs later,...don't coddle him because of his diagnosis,...work around it,...and knowing that perhaps he will have some delays in specific areas, the more he learns earlier than his peers, the less delays he will have. In some respects, even though he is a child, in certain areas there needs a push to "grow up" earlier. Too many times parents say to themselves and their children that "It's too early" or "He's just a child",...and then you see small children having skills and talents that exceed most adults, and it leaves you wondering "How in the world did that happen?",...parenting. Parents hold their children back,...plain and simple,...especially now-a-days. Guide them,...let them make their mistakes,...let them try again,...and again, until success,...most especially with ASD.

Take care

 

[doragirl]

Hello, Mom. I'm Dad to an ASD boy. First I want to thank you for being the wonderful parent that you are to your son in loving him for who he is. I feel the same about my son. I often say to my wife that I can not imagine our lives without our youngest. I thank you because I have a relative who also has a child with ASD and it saddens me to no end that this relative has done so much to try to change their child and considered the diagnosis of ASD to be devastating news. This relative among other things has insisted on mainstream classroom study for their child, ignoring their child's tears and sobbing from the stress of being in classes that are simply too far ahead of the child's pace.

I too have fears like you do, but one of my main missions in my life is to be there for our son, to teach him about the world, to praise and cheer him on for his strengths and help him as patiently as I can with areas he needs to work on. I try to focus on the present and try to minimize my worry for his future. The world would benefit from knowing him and I'm sure it's the same for your little guy.

Again, thanks for being a great mom.

From an autistic dad with an autistic son.

Apologies, I intended to respond and thank you so much for your thoughts and for sharing a window into your life parenting a child on the spectrum. I found a lot of comfort in your words. Many thanks.

 

[doragirl]

@doragirl,...just some thoughts to keep things in perspective.

For context, I am 56,...and have worked with autistic children at one of the largest children's hospitals in the US for 37 years. Yes,...if you're doing the math,...I started working there at 19. I have been married since 1987. I raised two wonderful boys,...very proud of them,...both successful engineers and financially secure.

That said, when I explain to parents of autistic children, who I am, my diagnosis,...it gives parents some perspective and hope. Sometimes the difference between a 6 year old autistic child and a 56 year old autistic adult is "light years" in terms of knowledge, self-awareness, maturity, social skills, etc.

Sure, there are things I am still learning about myself,...I know there are delays,...I have my difficulties,...but I keep moving forward. Every person with autism is different,...the degree of neurodiversity is much broader within our own community than it is within the neurotypical population. You can be with a parent group of 20,...each describing their child,...and you may be sitting back going,..."My child doesn't act like that."...and vice-versa.

I was raised in a generation where I had "behavior issues" and was punished,...there was no such thing as "high functioning autism" or "Asperger's condition" or ASD-1. My parents raised me to be strong, independent, and with a strong work ethic. Excuses were not accepted. Perfection was expected. Now, I think my parents could have done better with their methods, in retrospect,...but the end result has left me pretty well off,...relatively speaking. My parents had this "skillful neglect" approach down pat. If I wanted something,...I had to work to get it. If you don't know how to do something,...learn. That has been my life,...respiratory therapist, teacher, electrician, welder, engine builder, construction, researcher, computer programming,...some formal education,...some self taught. The point being,...from a parenting perspective,...it may be useful to put forth an extra effort in this direction, earlier vs later,...don't coddle him because of his diagnosis,...work around it,...and knowing that perhaps he will have some delays in specific areas, the more he learns earlier than his peers, the less delays he will have. In some respects, even though he is a child, in certain areas there needs a push to "grow up" earlier. Too many times parents say to themselves and their children that "It's too early" or "He's just a child",...and then you see small children having skills and talents that exceed most adults, and it leaves you wondering "How in the world did that happen?",...parenting. Parents hold their children back,...plain and simple,...especially now-a-days. Guide them,...let them make their mistakes,...let them try again,...and again, until success,...most especially with ASD.

Take care

Apologies for the delay in my response. Your story is truly inspiring and I am grateful for you sharing. I could only dream to accomplish as much, though for now I am trying to focus on being a good and supportive parent.

I do certainly baby my son. I think we both like it, but it likely does not benefit him. We are slowly weaning off a few things and trying to help him be more independent. Perhaps because he is my youngest (and likely last), I am reluctant to let some of that go. But we are making progress and it is going well.

I hear you about letting him build on his strengths. He is showing signs of being an early reader, despite his challenges with verbal speech. We always encouraged this but I didn't put a lot of emphasis on creating opportunities which is something we are starting to do more so now.

Again, thank you. This forum has been so good for me.

 

[Neonatal RRT]

Apologies for the delay in my response. Your story is truly inspiring and I am grateful for you sharing. I could only dream to accomplish as much, though for now I am trying to focus on being a good and supportive parent.

I do certainly baby my son. I think we both like it, but it likely does not benefit him. We are slowly weaning off a few things and trying to help him be more independent. Perhaps because he is my youngest (and likely last), I am reluctant to let some of that go. But we are making progress and it is going well.

I hear you about letting him build on his strengths. He is showing signs of being an early reader, despite his challenges with verbal speech. We always encouraged this but I didn't put a lot of emphasis on creating opportunities which is something we are starting to do more so now.

Again, thank you. This forum has been so good for me.

I have some understanding of what you are saying,...a child is a precious thing,...and that anxiety of someday having an "empty nest" is a real thing that couples go through. You've literally put your heart and soul into these kids. However, like all things, your life has "chapters", and part of that is letting each "little bird" have their "wings" and fly away from the nest. Your job, as a responsible parent,...a proud parent,...is setting them up for success in life. The best case scenario being that they are more "successful" in life than their parents. Waiting until they are 16-17 years old to teach them life skills is about 10 years too late, in my opinion. We taught our boys how to cook meals, do their laundry, manage a checkbook, invest, mow a lawn, do vehicle maintenance, shop at a market, woodwork, electrical, build computers, etc...even before their teenage years. When they went away to the universities, my wife and I didn't have to worry about them. Meanwhile,...keep in mind they were children of the '90's and 2000's,...and "helicopter parents" were the "thing". Sure enough, all those kids that grew up with my kids,...when they left home,...were lost and angry. Their parents sheltered them from the world, responsibilities, and hardships. Any bit of discomfort,...and the parents jumped in to "save them" from it. A significant percentage of "4.0 grade" high school students, scholarship winners, etc...bombed out of freshman year at the university,...living at home again with their parents, either working minimum wage, part-time jobs, going nowhere in life,...or worse. We heard these stories repeatedly from our boys,...of whom,...actually did better at the university than in high school. Sure, they had some really hard classes,...engineering,...but my wife and I told them repeatedly,..."Even if you fail the course,...don't quit,...because if you do, YOU are paying for it." Neither one of my boys dropped a class,...because, as they often said to their friends,..."My dad doesn't bluff. If he says something,...it's going to happen."

To be blunt,...our job as parents, in part,...is to raise a good citizen that is quite capable on their own. If your son is an otherwise smart kid,...the challenge is up to you to make that happen. What you don't want,...and of course, this happened all too many times with parents our age,...is that the child comes knocking back on your door after they had a major set back,...or worse, never leaves or tries. You, as a parent, did "your time",...and you don't want to be in your 40's, 50's, 60's taking care of an adult child,...spending your money that you would have rather put towards retirement and travel.

Believe me when I say that your children are only going to be children for a very short time of yours and their lives,...you don't "have time" in many cases,...and that's the good and bad, bittersweet news of it.

At any rate,...best of luck with everything.

 

[doragirl]

I have some understanding of what you are saying,...a child is a precious thing,...and that anxiety of someday having an "empty nest" is a real thing that couples go through. You've literally put your heart and soul into these kids. However, like all things, your life has "chapters", and part of that is letting each "little bird" have their "wings" and fly away from the nest. Your job, as a responsible parent,...a proud parent,...is setting them up for success in life. The best case scenario being that they are more "successful" in life than their parents. Waiting until they are 16-17 years old to teach them life skills is about 10 years too late, in my opinion. We taught our boys how to cook meals, do their laundry, manage a checkbook, invest, mow a lawn, do vehicle maintenance, shop at a market, woodwork, electrical, build computers, etc...even before their teenage years. When they went away to the universities, my wife and I didn't have to worry about them. Meanwhile,...keep in mind they were children of the '90's and 2000's,...and "helicopter parents" were the "thing". Sure enough, all those kids that grew up with my kids,...when they left home,...were lost and angry. Their parents sheltered them from the world, responsibilities, and hardships. Any bit of discomfort,...and the parents jumped in to "save them" from it. A significant percentage of "4.0 grade" high school students, scholarship winners, etc...bombed out of freshman year at the university,...living at home again with their parents, either working minimum wage, part-time jobs, going nowhere in life,...or worse. We heard these stories repeatedly from our boys,...of whom,...actually did better at the university than in high school. Sure, they had some really hard classes,...engineering,...but my wife and I told them repeatedly,..."Even if you fail the course,...don't quit,...because if you do, YOU are paying for it." Neither one of my boys dropped a class,...because, as they often said to their friends,..."My dad doesn't bluff. If he says something,...it's going to happen."

To be blunt,...our job as parents, in part,...is to raise a good citizen that is quite capable on their own. If your son is an otherwise smart kid,...the challenge is up to you to make that happen. What you don't want,...and of course, this happened all too many times with parents our age,...is that the child comes knocking back on your door after they had a major set back,...or worse, never leaves or tries. You, as a parent, did "your time",...and you don't want to be in your 40's, 50's, 60's taking care of an adult child,...spending your money that you would have rather put towards retirement and travel.

Believe me when I say that your children are only going to be children for a very short time of yours and their lives,...you don't "have time" in many cases,...and that's the good and bad, bittersweet news of it.

At any rate,...best of luck with everything.

Thank you for this. Yes, it was certainly an eye opener for me when I was reading back my post.

I am really impressed at how excited he is to work independently and demonstrate his new skills to us. He is also an excellent little helper and does a great job of the recycling and sorting laundry. Many of his current challenges are around self-care which I feel like I am not doing well enough to support him because I am so exhausted and have to manage a lot in my day. I will do better.

Thank you again for the inspiration!