I’m coming to the (very late) realization that my kid could have autism.

[extendedforecast]

Please do not quote me. My husband is not interested in pursuing a diagnosis, though I think he’ll come around eventually.  My son is 13; he’s an amazing kid who’s a little different. I’ve always called him my little curmudgeon, my little man of few words who only speaks when he has something important to say. He doesn’t like talking unless it’s about his favorite topic. So, two people in the last six months have suggested he might have autism. The first time I was like, “No way!” I admitted that he is different from the typical boy, but both DH and I were really quiet and shy as kids. The person pointed out that he often displays repetitive behaviors, such as swinging his arm. I dismissed it as a nervous behavior. The second time I was talking to someone about how he doesn’t like touching or eating foods with certain textures. I was also venting my frustration that he has a limited number of foods he’s willing to eat, and that he had recently dropped one of them. I was worried that he wasn’t getting enough nutrition from the foods on his list. (We have an actual list on the fridge to remind him that he likes other things besides pizza.) She asked if I had ever had him evaluated for sensory processing disorder or autism. Again, I dismissed it. Then one day I was listening to a review about a show called Love on the Spectrum, and it hit me that maybe my son is autistic on some level. The same day my husband and I went to eat alone and I blurted it out kind of nonchalantly. He agreed then got upset. He said that our son is perfect (I agreed) and that he didn’t want to get a diagnosis. He doesn’t want kids to treat him differently. He doesn’t want our son to think he’s different. I told him that different isn’t necessarily bad, that he may already think he’s different… I told him there are so many amazing people with autism. That seemed to cheer him up and we left it at that for now. Here’s the thing. All these years I’ve been beating myself up because I’ve been struggling to get my son to do certain things I’ve felt he should do or know by now. Things like tying his shoes (fictional shoes - he refuses to wear anything but sandals), riding a bike, reading things other than books and magazines about his favorite topic, ordering his own food at a restaurant, saying hi and bye to people when we go to parties and looking them in the eye. Then there’s things like the lack of affection. He’s never been cuddly or sought hugs. He will give them if asked. I feel like if he does have autism, I would be let off the hook for most if not all of these things, if you know what I mean. Obviously I would still work towards most of these, but I wouldn’t put so much guilt on myself. I don’t know. I’m just rambling. I hope I haven’t said anything insensitive. I just don’t know where to go or what to do without a diagnosis. And maybe he is neurotypical child who has some challenges. 

[freesia]

I have always thought of a diagnosis as a good thing. It can relieve the pressure you feel. It can give support ( and if he is autistic, adolescence may exacerbate things.) adults who work with him will know there is a reason for certain behavior or rigidity and approach it differently bc in my experience the rigidity comes off as defiance and needs a different approach than a neurotypical child. In my experience it is worse for the dc to just think they can’t get it than to know there is a reason. 

[Jean in Newcastle]

Our son wasn’t formally diagnosed as being on the autism spectrum until he was 16, though I knew that he was on the spectrum long before that. We waited because he had natural accommodations as part of our homeschooling. We needed the formal diagnosis for college accommodations. 
 

A couple of thoughts. A diagnosis is just a label. But it can be helpful for friends and family to understand things at least a bit from your son’s perspective. And it can help some kids to know why they think differently than those around them. 

[Wheres Toto]

Knowing that there was a reason he felt a certain way about things was actually very comforting to my son.    He knew he was different by the time he was 8 or 9 years old even though he was homeschooled.  Knowing why made things easier for him to take emotionally.  

[Lawyer&Mom]

I was diagnosed at 38, and I wish I had been diagnosed sooner.  It’s freeing to know why you struggle with certain seemingly random things.  (I did *not* know my discomfort wearing belts was connected to my difficultly making phone calls…)

Also, you want to get this sorted before college.  So many bright, high-functioning autistic kids struggle with the transition to college, and it would be great to have the supports in place to make this less difficult for him.

It’s not the label that’s going to make his life difficult.  Having a framework to understand his own challenges is empowering. 

[KSera]

I agree with everything everyone above said. In addition, I found out too late that there are programs and supports my dd would have qualified for had she been diagnosed before 18 that she doesn't because it was after. At 13, I had no idea we would ever need any such programs, but I wish we had found out sooner.

[purpleowl]

My son was 6 when we began pursuing and got his autism diagnosis. I have told people - I didn't suddenly start walking the road of parenting an autistic kid. I've been on that road since he was born. But NOW, the road has some streetlights. I can see the signs that tell me which road I'm on. I can see some of the bumps in the road and a curve or two up ahead (I can't see all of those things, of course, but way more than I could without any lights). It's so, so helpful to KNOW which road I'm on. 

And like others said, supports can be available to your son with a diagnosis. It's absolutely worthwhile to pursue the possibility.

[Rosie_0801]

I've watched the "don't tell them they are different/they might use it as an excuse" type parenting and now that the child in question is in their mid 20's, their parent is very, very unsatisfied with the result and very, very sure they did the right thing.

And yes, you should let yourself off the hook for all of those things. There is nothing you can do to make a NT kid autistic and there's nothing you can do to make an autistic kid NT. You just have to raise your kid as healthily as you can figure out how, no matter who they are.

Autism is a different dialect of human. It's not a personality disorder.

Difference is inevitable. People must be allowed to have their own personality to be healthy, no matter what brain wiring template they run on, and everyone's needs a goodly amount of spit and polish on the journey of life.

[extendedforecast]

3 hours ago, freesia said:

I have always thought of a diagnosis as a good thing. It can relieve the pressure you feel. It can give support ( and if he is autistic, adolescence may exacerbate things.) adults who work with him will know there is a reason for certain behavior or rigidity and approach it differently bc in my experience the rigidity comes off as defiance and needs a different approach than a neurotypical child. In my experience it is worse for the dc to just think they can’t get it than to know there is a reason. 

I know that a diagnosis is a good thing. How do I get my husband to realize this?In his mind, nothing is broken, so why try to fix it? He thinks we should keep meeting him where he’s at until he decides or starts asking questions, or when there are more substantial challenges. I feel like a diagnosis would help me to be a better parent to him and help me to know what goals we should be pursuing, where should I push him and where should I let off. 

[Lawyer&Mom]

3 minutes ago, extendedforecast said:

I know that a diagnosis is a good thing. How do I get my husband to realize this?In his mind, nothing is broken, so why try to fix it? He thinks we should keep meeting him where he’s at until he decides or starts asking questions, or when there are more substantial challenges. I feel like a diagnosis would help me to be a better parent to him and help me to know what goals we should be pursuing, where should I push him and where should I let off. 

My 9 year old was diagnosed at six.  I had to push my husband to get her diagnosed, because he didn’t see any issues.  (I had to get myself diagnosed first, to get him to consider it…)  She hasn’t had any problems in her mainstream classroom yet, but nevertheless she is in weekly speech therapy.  Autism is a social communication disorder.  I don’t need to wait for a crisis to start working on her communication.  Use the runway you have when things are good to prevent problems in the future.  
 

This is the one article you must read to see what obstacles you may encounter in the future:  https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile

[Rosie_0801]

1 hour ago, extendedforecast said:

I know that a diagnosis is a good thing. How do I get my husband to realize this?In his mind, nothing is broken, so why try to fix it? He thinks we should keep meeting him where he’s at until he decides or starts asking questions, or when there are more substantial challenges. I feel like a diagnosis would help me to be a better parent to him and help me to know what goals we should be pursuing, where should I push him and where should I let off. 

You probably know that pretty well already. Like any other skills, what is he ready to learn and what isn't he? And of course he is more likely to learn if he understands. When we're teaching them to talk and pay attention to the world, we draw their attention to "Ooh, there's a snail!" and "Can you remember what this flower is called?" When they're older, they need still need vocabulary and context for mostly everything, but a more complex level of everything than snails and dandelions, and to be talked through thinking patterns. 'This is the sort of thinking that needed to happen to prevent this bugger-up." etc. Your husband is right that you have to meet him where he's at, but I disagree with waiting for preventable challenges to hurt/embarrass/shame anyone or for him to ask questions he may never think to ask. My daughter hardly ever asks anything because she accepted at a young age that the world is a strange place, so she's very rarely surprised into commenting. So, I do my best to preempt topics. Girls need to know about periods *before* theirs starts. Kids need to know how to deal with crushes *before* they or their mates have any of consequence. Kids need to be taught how to have boundaries because so much in life teaches them that they aren't allowed to, even though it's right up there on the list of things one needs to be healthy. Etc. Now my not particularly empathetic or imaginative child is the agony aunt of her friendship group because her uncle and I blab so much at her on whatever topic is in the ether (she has remarkable tolerance) and we give other points of view on important important philosophical points like 'how sport plays a valuable role in people's lives and isn't as stupid as you thought. Do keep in mind that things you find boring aren't necessarily pointless, Dear Child.'

It's not about "this child is broken, we have to fix it." It's about how people don't do better at life when they're left to make it all up as they go along. To a certain extent, life is like that and ultimately we all walk alone, but the less you are being surprised by, the better choices you're able to make. Resilience and achievement are about being prepared, and being abandoned to the wolves isn't the best way to learn those things. It's pretty easy to look at a 13yo and think "Here's some stuff you're going to wish you knew in the next few years." It is mean to know it and not give the kid the option of hearing it. I teach my Aspie to do stuff her old mum can't do, to make the most of the flexibility she has that I don't.

 

I've seen parents of deaf babies and toddlers, who won't learn or teach their kids to sign because they're doing well so far. Well, yeah. That's because no one expects much in the way of eye contact, let alone conversation from babies and toddlers. How many will still think their kids are doing well when their teenagers haven't picked up enough English for the conversations that need to be had? Trainwreck prevention is good.

[freesia]

7 hours ago, extendedforecast said:

I know that a diagnosis is a good thing. How do I get my husband to realize this?In his mind, nothing is broken, so why try to fix it? He thinks we should keep meeting him where he’s at until he decides or starts asking questions, or when there are more substantial challenges. I feel like a diagnosis would help me to be a better parent to him and help me to know what goals we should be pursuing, where should I push him and where should I let off. 

I wish I had an easy answer for you. What I think you shouldn’t do is just shrug and say, dh doesn’t want to do we won’t. I’ve seen that too much and it is sad bc the mother and dc always end up feeling like failures when the dh was trying to avoid them feeling like failures. He just doesn’t know. I would find resources—books, podcasts, real people—who can educate him about how this can be a good thing and also how tough adolescence can be for these kids. When you are in crises, you may be less able to get cooperation from your dc. I would probably even see if I could discuss it with my dc’s doctor and maybe he or she would be able to help. 
 

Edited August 9, 2022 by freesia
Typo

[maize]

13 hours ago, Rosie_0801 said:

Autism is a different dialect of human. 

I love this framing!

My son was diagnosed at 16, after a major loss of ability to function. It seems that puberty and adolescence are really hard for a lot of autistic kids, and those that don't crash then often hit their wall when they try to navigate leaving home for college. We actually did do evaluations when he was younger that yielded diagnoses like ADHD and anxiety; finally getting the autism diagnosis I had wondered about all along was absolutely validating to me.

By thirteen, autistic kids are surely already aware that they are different. And other kids already treat them differently because they present and act differently. Giving him and those around him a framework for understanding that difference is far more beneficial than harmful. 

[73349]

Having an official diagnosis doesn't mean you're going to try to "fix" anything. It means you're acknowledging the reality of his neurodivergence. Many autistic adults wish that they had had that acknowledgment sooner. (If you're on Twitter, look for folks who are #ActuallyAutistic.)

[Lawyer&Mom]

Another angle for your DH:  the label may be new, but Autistic people are not.  We have always been here.  I’m at least fourth generation Autistic.  My great-grandpa was a successful auto-mechanic with his own shop, grandpa was a senior executive at a multinational corporation, dad was a software engineer, I’m a lawyer.  We all had/have marriages, mortgages and kids.  You know other Autistic adults.  You had Autistic classmates in college, you have or have had Autistic coworkers.  They probably weren’t diagnosed, but that is just a generational thing.  It’s not because they didn’t need the supports, the supports regrettably just weren’t there. (And consequently life was harder than it had to be.) Autism isn’t  strange and foreign, it’s a very normal part of being human.  And getting your kid diagnosed and not avoiding the label will help loosen the stigma for him and his future kids.

(I know that not all Autistic people will grow up to be married professionals.  But there are lots and lots of us and we are Autistic too.)

[shawthorne44]

I truly think that there is a spectrum.   As in we are all somewhere on the same spectrum.  At one end you have the severely autistic and at the other end you have the extremely socially aware.   When DD was that age, I taught in her preschool Sunday School class.   There was this little girl that was already destined to be the popular girl throughout school.   You can tell her parents had both been the most popular kids in school.   She was Preschool and she was so socially aware.    I'd put myself in the NT range, but very near the autistic end.  Pretty sure my aunt was solidly autistic.  

[Clemsondana]

Getting a diagnosis doesn't mean that other kids will treat him differently, because there is no reason for them to know.  If they treat him differently, it will be because of a behavior that they are responding to, not a diagnosis that they don't know about.  And, in some circumstances, knowing the diagnosis may help other kids respond more appropriately.  Anecdotally, some kids do better knowing that a classmate has (insert diagnosis) and isn't just being attention-seeking or purposefully disruptive.  In other words, what you do with a diagnosis will depend on the situation. My older has apraxia of speech, which had some related coordination issues that were thankfully relatively mild.  But, when kid first started taking some sports lessons at age 9-10, we told the instructors about it because they needed to know that relying on 'muscle memory' wasn't like to be effective. We've never told any team coach, because we worried that it might bias their perceptions and affect playing time, but we paid attention to any corrections that they made so that we could relay them to the instructors to work on.  So, we handled the diagnosis differently with different people, but it gave us information about how to handle things.  

Any diagnosis (ADHD, autism, sensory processing disorder, etc) can also be helpful because they can give an indication of when a child truly can't do something and when they just don't want to and need more encouragement or pushing to try something.  It can also give you an idea of what types of situations may be a struggle - you may need to coach or prepare your child for situations that other kids just adapt to without much coaching or scaffolding.  My kid has a teammate who got a late autism spectrum diagnosis, and it's been helpful as the family looks at college options because there are some schools that have autism support, which is likely to allow kid to live independently on a campus earlier than would have otherwise been possible.  

[stripe]

Having a child with a physical or mental health concern doesn’t make your child less of a person, less important, or not your perfect child. I know it’s incredibly hard to feel like something was wrong, or also that you missed something. But it’s okay. You love him, and you did your best.

Also, having a diagnosis isn’t what’s going to make kids treat him differently. They may do this based on his behavior. It’s not the diagnosis. Other kids and adults may spot the behaviors and either react to them on their own (which includes finding them annoying, when they may not be something the child can change) or get help in understanding them better. So when a child observes another child has a hearing aid, it can help to understand hearing loss so as to know how best to interact with the kid (no need to shout, for example, or don’t mumble, or face the other child when you want to talk so it’s obvious) and understand, for example, that the child isn’t ignoring others but simply didn’t hear them.

Here are some advantages of a diagnosis:

* your child may be entitled to a host of different therapies from health insurance that might actually be beneficial, and also receiving that therapy could be useful to him now, as he grows up, versus waiting or not getting any

* diagnosis of developmental disorders including autism before 18 may allow your son to receive other benefits, such as disability, that he would not be eligible for if he was diagnosed as an adult or not ever formally diagnosed 

* you may find it helpful to have a diagnosis so that you can get relevant help/therapy including finding a parents’ group rather than just something based on some behaviors of your son that don’t exactly add up to anything clearly

If I may also add, don’t avoid getting help when you think you need it. SWB makes this point in her lectures. Avoiding it doesn’t make it go away. Sometimes things change during adolescence (for example, dealing with sexuality, including possible inappropriate behaviors, or dealing with a child who is now larger and stronger than the mom) and you need help with things you didn’t foresee, that can really strain your relationship with your child. It’s really hard to acknowledge problems and take a step to get help, but you may find someone who is genuinely helpful. I hope you do.

 

[Janeway]

Why would you want an official diagnosis? Unless you are looking for government assistance or he is having trouble functioning in the classroom, then there is not much point.

Also, having the diagnosis could limit some opportunities in the future, like going to a military academy such as the Air Force Academy. And as far as others treating him differently, they will only do that if they know about his DX.

This is coming from a been there, doing that parent.

Edited August 10, 2022 by Janeway

[Lawyer&Mom]

10 minutes ago, Janeway said:

Why would you want an official diagnosis? Unless you are looking for government assistance or he is having trouble functioning in the classroom, then there is not much point.

College accommodations.  I can’t recommend a single dorm room highly enough.  We need social downtime, and you can’t get that in a shared room.  Nothing to do with ability to function in a classroom.

[Janeway]

4 minutes ago, Lawyer&Mom said:

College accommodations.  I can’t recommend a single dorm room highly enough.  We need social downtime, and you can’t get that in a shared room.  Nothing to do with ability to function in a classroom.

Mine have all gotten single rooms because of this. However, even though my kids have been formally diagnosed, I never turned that in for room accomodations. The family doctor wrote a note for the housing office to give him what he needed. 

I have found it to be costly to get the DX. I have nothing against it or anything, but, I also know if someone does not want to get a formal DX, it is not that big of a deal. Just talk to the pediatrician or family doctor about it and he/she might be willing to write any needed requests for these things.

[Shifra]

I am also going to suggest teaching your child social skills. Etiquette, even, would help. Children on the spectrum need explicit instructions of how to act in social situations. Social ques may not be apparent to them.

[Ting Tang]

I’ve decided to seek a diagnosis for my 9 year old. I’m convinced he’s on the spectrum, and maybe other things are going on. I’ve tried on my own with unreturned calls, so now I’m hoping our fill-in pediatrician can get it started. I just want one in case he needs accommodations later. I don’t feel like he needs a lot therapies now. He was in early intervention and was dismissed from his IEP in Kinder. A diagnosis is a tool in my opinion. 

[Mrs Tiggywinkle]

Autism is so often genetic. The neuropsych who diagnosed my son, in the conference with me and my husband, said that for every child he diagnosed he finds an undiagnosed adult in their family, most often a parent. Obviously this was an exaggeration, but I knew which side DS got it from and pursued my own evaluation after that.

Knowing I am on the spectrum helped so much. I went decades thinking there was something wrong with me only to find out there isn’t.  I just have a neurological difference.

All that to say—is there a possibility your husband is on the spectrum? Sometimes it’s hard to see the same traits in our children that we remember having growing up, yet now the world is putting a label on those traits.

[Frances]

On 8/10/2022 at 10:43 AM, Janeway said:

Why would you want an official diagnosis? Unless you are looking for government assistance or he is having trouble functioning in the classroom, then there is not much point.

Also, having the diagnosis could limit some opportunities in the future, like going to a military academy such as the Air Force Academy. And as far as others treating him differently, they will only do that if they know about his DX.

This is coming from a been there, doing that parent.

I would think that knowing would outweigh any potential negatives and help someone understand why they might experience the world somewhat differently than others and also be more aware of common comorbidities such as anxiety and depression. Knowledge is power. As for limiting opportunities like military academy admissions, that is likely a good thing, as it probably would not be a good fit. It’s hard to imagine any of the autistic people in my life wanting to be with others in a very intense way almost 24/7 for four years. The military academies are like regular college on super steroids. While the discipline and structure might sound appealing, I think the reality would be very different. As for others treating him differently, I disagree that will only happen if they know about his diagnosis. People are treated differently for all sorts of reasons. In fact, it might help someone be more aware of why they are already treated differently and if they so desire, modify their behavior to some degree.

[ieta_cassiopeia]

On 8/9/2022 at 4:29 AM, extendedforecast said:

I know that a diagnosis is a good thing. How do I get my husband to realize this?In his mind, nothing is broken, so why try to fix it? He thinks we should keep meeting him where he’s at until he decides or starts asking questions, or when there are more substantial challenges. I feel like a diagnosis would help me to be a better parent to him and help me to know what goals we should be pursuing, where should I push him and where should I let off. 

It can sometimes take years to set up supports if starting without a diagnosis. Having the diagnosis doesn't require obtaining supports immediately, but does allow the option of obtaining such supports much quicker than otherwise if events are going in a direction that indicates these would be useful. (The range of possible supports is increasing on a piecemeal basis, nowadays including such things as employment support, independent living support and friendship groups, not just the group homes and institutionalisation that were once all that was available to autistic adults).

Knowing can be very helpful to autistic people themselves, and sometimes can make things easier in the home. Especially if it turns out it runs in the family, and/or it opens up new ways to understand themselves that don't require blaming anyone or thinking oneself as inferior in any way. I have known one autistic person who didn't get told until they were an adult, and got upset at the parent for not saying so earlier (admittedly in that case the diagnosis had existed for some time prior to being told, but the autistic person thought the information was a lot more important than the parent did).

Neurotypical people do treat autistic people differently, even without a diagnosis, and mostly by accident - a study showed it happened within seconds of meeting unlabelled autistic people. Knowing this can help with figuring out how to adapt to a social situation that won't always be as kind as that which one's family and home community are willing to provide, and a diagnosis can provide more tools to use concerning it. (Some of those tools are better than others, and some require great caution).

[Moose]

My husband and I have long suspected that our son is on the spectrum. He didn't speak till he was 3 and a half, he would just grunt and point. He's been stimming since he was 6 months old and used to repetitively slam his head into the arm of the couch. He is now 9 and still stims, has issues with clothing textures, food textures, loud noises, and is terrified of bugs and animals. When he was 2 or 3 we got him in to get looked at by the childhood development team and were seen by the director of the department. She all but outright accused me of trying to get my son a false diagnosis just so I could get a tax break. In her opinion, absolutely nothing was "wrong" with him, and since she was the head of the department, there wasn't anywhere else to go to for a second opinion. 

Like I mentioned, my son is now 9 and we haven't tried to get another diagnosis. I'm not sure what it would even do for us at this point. I would say that 80% of the homeschoolers I meet are homeschooling because the public schools are failing their neurotypical kids. The teachers talk a good game at those intake meetings, but the supports are just not there during the school year. For my husband and I, we believe he is on the spectrum and we take that into consideration when it comes to how we handle things and life choices we make. It does make it "easier" in the sense of "mom guilt", but it doesn't really change anything. Family members and people who don't get it, won't get it just because there's an official diagnosis. 

[freesia]

2 hours ago, Moose said:

My husband and I have long suspected that our son is on the spectrum. He didn't speak till he was 3 and a half, he would just grunt and point. He's been stimming since he was 6 months old and used to repetitively slam his head into the arm of the couch. He is now 9 and still stims, has issues with clothing textures, food textures, loud noises, and is terrified of bugs and animals. When he was 2 or 3 we got him in to get looked at by the childhood development team and were seen by the director of the department. She all but outright accused me of trying to get my son a false diagnosis just so I could get a tax break. In her opinion, absolutely nothing was "wrong" with him, and since she was the head of the department, there wasn't anywhere else to go to for a second opinion. 

Like I mentioned, my son is now 9 and we haven't tried to get another diagnosis. I'm not sure what it would even do for us at this point. I would say that 80% of the homeschoolers I meet are homeschooling because the public schools are failing their neurotypical kids. The teachers talk a good game at those intake meetings, but the supports are just not there during the school year. For my husband and I, we believe he is on the spectrum and we take that into consideration when it comes to how we handle things and life choices we make. It does make it "easier" in the sense of "mom guilt", but it doesn't really change anything. Family members and people who don't get it, won't get it just because there's an official diagnosis. 

It could get him access to OT which would help with the sensory.  It could get him access to social skills group if he starts having trouble (I've seen that happen around 13 or so as the other dc mature, but ASD kids tend to mature more slowly. The other children's verbal communication also takes a jump and they become more interested in talking. The ASD kids, ime, struggle a lot at this point with connecting to the other kids.)  It will also help with getting support at university--all the things you are taking into consideration now.  It may help him understand himself and not feel as though he's just not trying hard enough.  He'll understand that he sees things differently for a reason.

[Moose]

19 hours ago, freesia said:

It could get him access to OT which would help with the sensory.  It could get him access to social skills group if he starts having trouble (I've seen that happen around 13 or so as the other dc mature, but ASD kids tend to mature more slowly. The other children's verbal communication also takes a jump and they become more interested in talking. The ASD kids, ime, struggle a lot at this point with connecting to the other kids.)  It will also help with getting support at university--all the things you are taking into consideration now.  It may help him understand himself and not feel as though he's just not trying hard enough.  He'll understand that he sees things differently for a reason.

My child was in OT, Speech, PT, and saw an anxiety disorders nurse. He's been discharged from all of them. My son will have to enter the public school system again, because where we live, you cannot get into a numberof colleges without high school credits (which can only be attained through the province), So I am curious to see what will come up then. But at the same time, these supports are supposed to be there, and accessible - but good luck trying to get any follow through. I keep hearing the same things: he's on a waiting list; there's one OT teacher working between 3 schools (and she has 150 kids to help); if your child is overwhelmed in the classroom we will take him out for a walk. I have one homeschool friend whom told me her child took so many walks during the school year she never learned how to spell or practice her writing - she was out for a walk to "regulate". 

 

Edit to add: OT, PT, etc is also tied up with the school system (where I live). Your child needs to be in public school to get access to these supports.

Edited August 16, 2022 by Moose

[cbollin]

30 minutes ago, Moose said:

Edit to add: OT, PT, etc is also tied up with the school system. Your child needs to be in public school to get access to these supports. 

 Where I live, private clinic options exist for ST OT PT  etc, as well as option to get through public school.  just sharing in case that helps someone on the thread.  with my youngest we had to do private route because the school system here is lacking.  But I know that varies widely by location and economic factors of course.

[Moose]

11 minutes ago, cbollin said:

 Where I live, private clinic options exist for ST OT PT  etc, as well as option to get through public school.  just sharing in case that helps someone on the thread.  with my youngest we had to do private route because the school system here is lacking.  But I know that varies widely by location and economic factors of course.

That's a great point. My comment was definitely location specific. I edited my original post. Thanks. 

[freesia]

43 minutes ago, Moose said:

My child was in OT, Speech, PT, and saw an anxiety disorders nurse. He's been discharged from all of them. My son will have to enter the public school system again, because where we live, you cannot get into a numberof colleges without high school credits (which can only be attained through the province), So I am curious to see what will come up then. But at the same time, these supports are supposed to be there, and accessible - but good luck trying to get any follow through. I keep hearing the same things: he's on a waiting list; there's one OT teacher working between 3 schools (and she has 150 kids to help); if your child is overwhelmed in the classroom we will take him out for a walk. I have one homeschool friend whom told me her child took so many walks during the school year she never learned how to spell or practice her writing - she was out for a walk to "regulate". 

 

Edit to add: OT, PT, etc is also tied up with the school system. Your child needs to be in public school to get access to these supports. 

Ah, okay.  I see what you are saying.  I haven't lived in Canada for years and my kids were homeschooled there.  My dd is in university in Canada, but doesn't have special needs.  I know that in the States some universities have support for dc with diagnosed issues.  It's a good idea here to have the diagnosis in order to access the supports when you begin university rather than playing catch up particularly if the dc is also living away from home for the first time.  It sounds like when your dc returns to public school, you will have a trial run of how things go.

 

[kbutton]

On 8/8/2022 at 7:16 PM, Rosie_0801 said:

I've watched the "don't tell them they are different/they might use it as an excuse" type parenting and now that the child in question is in their mid 20's, their parent is very, very unsatisfied with the result and very, very sure they did the right thing.

And yes, you should let yourself off the hook for all of those things. There is nothing you can do to make a NT kid autistic and there's nothing you can do to make an autistic kid NT. You just have to raise your kid as healthily as you can figure out how, no matter who they are.

Autism is a different dialect of human. It's not a personality disorder.

Difference is inevitable. People must be allowed to have their own personality to be healthy, no matter what brain wiring template they run on, and everyone's needs a goodly amount of spit and polish on the journey of life.

Wise words.

I have an 18 year old on the spectrum. If we had let things go...*shudder.* He is happy to have had the help, he's still autistic, but he has tools, and some troublesome things are a non-issue now. Others are more manageable, and he has some areas where he went from not very functional to fine. Did you know, for instance, that some people respond well enough to OT to have few or no sensory issues as a result? That was life-changing for my son. He needed OT to not respond to certain things as if a bomb just went off, and he was fleeing for his life. Not everyone gets those results, but most people see a significant improvement!

On 8/9/2022 at 1:37 AM, Rosie_0801 said:

You probably know that pretty well already. Like any other skills, what is he ready to learn and what isn't he? And of course he is more likely to learn if he understands. When we're teaching them to talk and pay attention to the world, we draw their attention to "Ooh, there's a snail!" and "Can you remember what this flower is called?" When they're older, they need still need vocabulary and context for mostly everything, but a more complex level of everything than snails and dandelions, and to be talked through thinking patterns. 'This is the sort of thinking that needed to happen to prevent this bugger-up." etc. Your husband is right that you have to meet him where he's at, but I disagree with waiting for preventable challenges to hurt/embarrass/shame anyone or for him to ask questions he may never think to ask. My daughter hardly ever asks anything because she accepted at a young age that the world is a strange place, so she's very rarely surprised into commenting. So, I do my best to preempt topics. Girls need to know about periods *before* theirs starts. Kids need to know how to deal with crushes *before* they or their mates have any of consequence. Kids need to be taught how to have boundaries because so much in life teaches them that they aren't allowed to, even though it's right up there on the list of things one needs to be healthy. Etc. Now my not particularly empathetic or imaginative child is the agony aunt of her friendship group because her uncle and I blab so much at her on whatever topic is in the ether (she has remarkable tolerance) and we give other points of view on important important philosophical points like 'how sport plays a valuable role in people's lives and isn't as stupid as you thought. Do keep in mind that things you find boring aren't necessarily pointless, Dear Child.'

It's not about "this child is broken, we have to fix it." It's about how people don't do better at life when they're left to make it all up as they go along. To a certain extent, life is like that and ultimately we all walk alone, but the less you are being surprised by, the better choices you're able to make. Resilience and achievement are about being prepared, and being abandoned to the wolves isn't the best way to learn those things. It's pretty easy to look at a 13yo and think "Here's some stuff you're going to wish you knew in the next few years." It is mean to know it and not give the kid the option of hearing it. I teach my Aspie to do stuff her old mum can't do, to make the most of the flexibility she has that I don't.

I've seen parents of deaf babies and toddlers, who won't learn or teach their kids to sign because they're doing well so far. Well, yeah. That's because no one expects much in the way of eye contact, let alone conversation from babies and toddlers. How many will still think their kids are doing well when their teenagers haven't picked up enough English for the conversations that need to be had? Trainwreck prevention is good.

I used to narrate life exhaustively for my son, but it was incredibly beneficial. As he has aged, he's also taken to youtube videos to explain things, and he had a BCBA that worked with him on a lot of life skills in a sociable and fun way--he learned so much! 

[kbutton]

As someone else on here has put it, you are the parent, and generally only one parent has to consent to evaluations. Husbands are notoriously behind the curve on these things. It nearly broke my marriage, and I made big waves to get my kids what they've needed. Now DH is on board and shakes his head at husbands who are not. 

It's not an insurmountable problem to not have a husband on board, but only you can decide what route to take to get past his roadblock self. 🙂 

[Rosie_0801]

13 minutes ago, kbutton said:

As he has aged, he's also taken to youtube videos to explain things

*cough, cough* Don't we all?  

[kbutton]

53 minutes ago, Rosie_0801 said:

*cough, cough* Don't we all?  

I am kind of slow to that way of doing things, honestly, so I am not sure about others. I can scan a written explainer to see if it's what I want, but videos aren't scanned quite as easily, and drives me nuts to sift through them. 🙂 

Mostly I am just pointing out that he become much more independent and found tools for himself. 

[peemz706]

My daughter was diagnosed at 12, but we should have known at age 3 due to the signs, major explosions, etc. She was misdiagnosed as bipolar for YEARS. She stopped taking her meds about 8 months ago, she is now 23, and she is FINE. She absolutely hates that she is on the autism spectrum and says people treat her differently. She also occasionally overhears people say "that is so autistic" which is very hurtful to her. I don't have answer, but it is NOT fun for my daughter knowing she is on the spectrum and yes, she has been in therapy her whole life practically. 

[PeterPan]

14 hours ago, peemz706 said:

She also occasionally overhears people say "that is so autistic" which is very hurtful to her.

Is she on any autism-specific Facebook groups? Might be something for her to consider as a way to get some camraderie. And I agree, this kind of trite, inaccurate social understanding is why it's STILL not safe, despite all the "awareness" hubub to be out about one's autism diagnosis. You're then subjected to all the stupidity, sigh.

So maybe hanging with other people who DO get her will help a bit.  

And yeah, I think that's something you don't grow out of, the conflict of wanting to be like others and then realizing you're going to have to be strong enough to be yourself and be different.

[Miguelsmom]

My son was DX'd by ten, then re diagnosed at 17 after going through a couple of Drs.

It would have been so much easier if I was DX'd (different DX) when I was younger. I may have finished highschool or college.

My son is on the spectrum he had a lot of souport was able to finish college with alternative degree where it was almost all classes he picked. So every required courses we were able to explain exactly why he needed that course for his goal.

He doesn't tell others but his friends know. Medicine and there's vocational rehab. What we are finding with our son is that he will succeed with a high enough paying part time job. But he'll probably not work full-time. We've worked hard on everyone asking for what they want/ need and listening to others boundaries. Like texting before calling. Asking for a game ( instead of deciding it'll be a no), asking for a hugs. Dxing helps us know more what we are working with. We liken it to running on a different computer operating system. There's nothing wrong with him or any one with a disorder. It's just we experience the world differently. Not diagnosis is making him operation at a disadvantage. 

 

You wouldn't think a person not walking on a broken leg was lazy but the ability to get a walking cast would be celebrated when walking again without that help would feel impossible.

[stripe]

On 8/10/2022 at 1:43 PM, Janeway said:

Why would you want an official diagnosis? Unless you are looking for government assistance or he is having trouble functioning in the classroom, then there is not much point.

The thing is that one may not know that such assistance may be helpful later on, and where I live, a developmental disorder (which includes autism) must be diagnosed BEFORE 18 in order to get government assistance, and also, health insurance companies where I live are required to cover a host of therapies for children with autism, which may be beneficial. I say this as someone whose child’s behavior as an adolescent was not in a direction I would have anticipated. It would have been much better to have gotten help sooner. Also, he is already ineligible for and uninterested in serving in the military so trying to hide health problems to get into the military wasn’t on my radar. 

[Jean in Newcastle]

On 8/10/2022 at 10:43 AM, Janeway said:

Why would you want an official diagnosis? Unless you are looking for government assistance or he is having trouble functioning in the classroom, then there is not much point.

Also, having the diagnosis could limit some opportunities in the future, like going to a military academy such as the Air Force Academy. And as far as others treating him differently, they will only do that if they know about his DX.

This is coming from a been there, doing that parent.

I realize that it’s a spectrum but the military would be a spectacularly bad fit for everyone I know on the autism spectrum. There are no “single dorm room “ exceptions in boot camp. The sensory overload and requirements that don’t even allow someone to step away to regroup or self manage would make the military impossible for those people I know. So not getting a helpful diagnosis because it would keep someone from joining the military seems very strange to me. 

[Jean in Newcastle]

I got curious.  This is a good overview of people with ASD in the military.  https://www.elemy.com/studio/autism-resources/military/

So it is possible with a waiver.  But I am actually in favor of the care that they take in making sure that the person can handle the military environment and requirements.  I would be very wary of the success of anyone who tried to circumvent that if they truly had the needs and characteristics of someone with ASD. 

[kbutton]

1 hour ago, Jean in Newcastle said:

I got curious.  This is a good overview of people with ASD in the military.  https://www.elemy.com/studio/autism-resources/military/

So it is possible with a waiver.  But I am actually in favor of the care that they take in making sure that the person can handle the military environment and requirements.  I would be very wary of the success of anyone who tried to circumvent that if they truly had the needs and characteristics of someone with ASD. 

I think sometimes undiagnosed people end up in the military and thrive on the predictability and routine, but then struggle when they leave. I can think of two people likely in this category. Home life without supports was rocky for spouses and family as well.

[prairiewindmomma]

There are transition to adulthood services, including job training programs, that are absolutely wonderful here AND that absolutely require some form of documentation of issues before age 16. 

We have quirky kids who have had, for the most part, pretty quirky friends also.  We've watched as they all graduate high school and moved into adulthood.  Some have been evaluated and some have not. In fact, we've watched a number be formally diagnosed in their 20s because of crash and burns at university, in the workforce, and with relationships.  My .02---ignoring an issue means not addressing an issue.  Why wouldn't you want to shift stumbling blocks out of their path? 

If he's not able to order in a restaurant or socially engage, he's got barriers to independent adulthood.  If you fast forward to life with him now age 20, what are you hoping that looks like? What does he want for himself? You've got to figure out how to get from Point A to Point B. You're dealing with common issues, and even if adult life looks unconventional for him, I think you can get him to a point of where he's more comfortable and more confident if you seek some outside support.

FWIW, it's also really common for husbands to be late to the game and unsupportive. That is a husband problem, not a kid problem. Help the kid.

 

[kiwik]

On 8/10/2022 at 7:19 AM, shawthorne44 said:

I truly think that there is a spectrum.   As in we are all somewhere on the same spectrum.  At one end you have the severely autistic and at the other end you have the extremely socially aware.   When DD was that age, I taught in her preschool Sunday School class.   There was this little girl that was already destined to be the popular girl throughout school.   You can tell her parents had both been the most popular kids in school.   She was Preschool and she was so socially aware.    I'd put myself in the NT range, but very near the autistic end.  Pretty sure my aunt was solidly autistic.  

The autistic spectrum includes only those who are autistic.  It is not a spectrum of NT to severely affected by autism.  "We are all a little bit autistic" I'd as unhelpful as the "all kids are gifted" claim.  You wouldn't say "all kids are tall" etc.

 

With respect to diagnosis ASD is a better label than "antisocial brat" or "freak".

[shawthorne44]

On 9/16/2022 at 3:38 PM, kiwik said:

The autistic spectrum includes only those who are autistic.  It is not a spectrum of NT to severely affected by autism.  "We are all a little bit autistic" I'd as unhelpful as the "all kids are gifted" claim.  You wouldn't say "all kids are tall" etc.

 

With respect to diagnosis ASD is a better label than "antisocial brat" or "freak".

I know the term "on the spectrum" just refers to autism.   But, when you think about it, there is a true (generic version of the term) spectrum of socially-wired brains.    I find it interesting that kids can also be born heavily socially-wired.  
Using your "tall" example, there is different categories of people that are shorter than considered 'normal'.    We are all on the (generic version of the term) spectrum of heights.  A guy just over the 'normal' height is likely to share some of the same problems as a guy just under that normal height.  

 

[Lawyer&Mom]

9 minutes ago, shawthorne44 said:

I know the term "on the spectrum" just refers to autism.   But, when you think about it, there is a true (generic version of the term) spectrum of socially-wired brains.    I find it interesting that kids can also be born heavily socially-wired.  
Using your "tall" example, there is different categories of people that are shorter than considered 'normal'.    We are all on the (generic version of the term) spectrum of heights.  A guy just over the 'normal' height is likely to share some of the same problems as a guy just under that normal height.  

 

Autism spectrum wasn’t meant to be the spectrum from Autistic to Not-Autistic present in a group of people.  It was meant to convey the spectrum of abilities/deficits within an individual Autistic person.  (That horse has clearly left the barn.)  I much prefer the Autism as an Ice Cream Sundae Bar metaphor.  We don’t all have the same amounts of the same toppings, but we are all Autistic, despite our differences.  

[kiwik]

On 9/19/2022 at 7:46 AM, Lawyer&Mom said:

Autism spectrum wasn’t meant to be the spectrum from Autistic to Not-Autistic present in a group of people.  It was meant to convey the spectrum of abilities/deficits within an individual Autistic person.  (That horse has clearly left the barn.)  I much prefer the Autism as an Ice Cream Sundae Bar metaphor.  We don’t all have the same amounts of the same toppings, but we are all Autistic, despite our differences.  

Or the cupcake which I guess is the same.