Waiting for diagnosis 12 year old boy

[Momof2]

Hi,
I’m new to this forum, and new to posting about anything. Looking for support or advice from anyone that may have more experience in autism.

I have a son, who I love more than anything, he has always been “different” (didn’t care about having friends, always seemed to exaggerate his emotions, behavioural issues at school. Always saying he was bored and didn’t want to be there, making excuses or pretending his sick etc to leave).

He is VERY intelligent which we have heard his whole life, adults are shocked at the conversations he has and the knowledge he has in a variety of topics. If I wrote everything about him I would have to write a novel.

We recently brought him to a psychologist to deal with some behavioural issues we have had from a recent move, after 25 minutes of talking with him she brought me in to tell me her opinion is he is neuro divergent and on the spectrum. This is something I’ve suspected since he was very young, but because he was high functioning and not knowing much about autism I wasn’t sure.

He is not diagnosed and it’s not confirmed however the more I research it does make sense.

My struggle right now is even if he is autistic we have built routines and have pushed him outside his comfort zone and he has excelled and met many challenges that I’m sure we’re not easy for him. However, in the counselling session she told me (with him in the room) that he just needs acceptance, video games are good for him and that if he doesn’t want to go to school maybe he can do half days or online schooling.

Now I do agree on the acceptance and we will stop putting pressure to make friends and try to make things less stressful for him. However he is a master at loopholes and finding ways to do what he wants. Now that he has heard this he is trying to get out of school everyday, he is bragging about how easy school is (this is not a new thing he’s said over the years) and how he doesn’t need to do all the boring stuff when he can get his work done in 5 minutes and everyone else takes 50 minutes.

I’m not sure what I can do at this time, I’m having a meeting with the school next week, but without a diagnosis I’m not sure what they can offer. I also don’t want to backtrack and erase all the work we have done in these 12 years.

I guess the biggest thing is, I just don’t know. I don’t know what the right approach is. I know us moving to a new town/school is what’s caused a lot more of this to surface, and although I feel the move will be great in the long run, starting a new job, in a new place and trying to figure this out for him has been a challenge.

I’m unsure what supports are available and how to navigate these meetings with his feelings in mind but also trying to still continue what we have worked so hard to build.

 

[VictorR]

Welcome. Ultimately, each person is unique and the best approach for them would be whatever best takes into account their strengths, while also encouraging them.

Two books which I'll suggest which might help with providing some insights are:

Uniquely Human

A groundbreaking book on autism, by one of the world's leading experts, who portrays autism as a unique way of being human--this is "required reading....Breathtakingly simple and profoundly positive" (Chicago Tribune). Autism therapy typically...

www.autismforums.com

Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew...

Part memoir, part guide, and part love letter, Sincerely, Your Autistic Child is an indispensable collection that invites parents and allies into the unique and often unheard experiences of autistic children and teens, highlighting how parents...

www.autismforums.com

If you're able to, it would probably be best to try to get a diagnosis as soon as possible as that would help open up access to funding and supports (which of course vary by jurisdiction).

 

[Nitro]

 

[Rodafina]

Hello and welcome. Much compassion to you as you navigate raising a child possibly on the spectrum… As a child who was there myself I understand it’s tricky for you as the mum. There’s so many resources here and many others who were in a very similar position, so hopefully you can learn a lot here and get some support.

However he is a master at loopholes and finding ways to do what he wants.

Another way to look at this is he is adaptable, and trying to survive in a confusing world. Sometimes, what looks like avoidance for us comes from much deeper issues of misunderstanding or fear or disinterest, all things that can prohibit how motivated we are.

 

[Outdated]

The dual blessing and curse of an intelligent child?

I was a straight A student. The academic work was too easy, too boring, tailored for kids that in year 10 are still counting on their fingers and can't tell you the 6 times tables. They were teaching me nothing but expecting me to learn how to socialise with my tormentors.

I wagged school 3 days out of every 5. I'd sit down the end of the street and wait to see Mum drive to work, then I'd go home again. No teacher ever mentioned this to my parents, I think they were happier when I wasn't there. It wouldn't have made any difference if my parents did know, once my mind is set there's no altering it.

I learnt more from my parents and grandparents than I did from 12 years of the education system.

 

[Hypnalis]

A contrasting, but not dissenting, view to Outdated's: I attended school and tertiary education normally.

The experience was affected by my nature of course, but it helped me develop adequate (though not good), social skills.
I think getting used to NT's "organically", and accepting that they are the norm, was an important and positive part of my personal development. I'm glad my life worked out that way.

Of course if I went back with my current level of social adaptation it would all be a lot easier and some things would be a lot more fun, but I think that's true for most of humanity

@Momof2
This difference is just evidence of the principle: "if you've met one Aspie you've met one Aspie".
My (unprovable) opinion is they we all have something in common, but that otherwise we vary as much as any similarly large random group of people.

In terms of your post: I can't say whether your psychologist is right about your son being ND, but I think she should have kept her mouth shut regarding video games and missing school.
Both of these can be bad for some Aspies, and they can be very bad for people with certain common associated conditions (notably ADHD-I, which your son may well have).
IMO your judgement as to whether those are good or bad for your son is as good as (quite likely better than) your psychologist's.

An aside - this kind of discussion often brings up an associated memory: that there was a time when physicians (supposedly) thought Opium was a universal cure (panacea). It certainly looks like one at first glance, and makes things easy for the healer.
But it only suppresses the symptom the patient dislikes the most, and in most cases doesn't help otherwise.

IMO psychologists are currently at that stage with "high-end ASD1's".

Definitions are vague and definitely severely flawed. The cause is unknown. Diagnosis is almost entirely subjective, difficult, and fairly inconsistent. There are no simple treatments, no full treatments, and many of the partial treatments, like ABA, are morally repugnant at best.

Professionals can certainly help, but subjects and/or their guardians need to be very engaged in what's going on, or they may find the cure is worse than the issue.

 

[Momof2]

A contrasting, but not dissenting, view to Outdated's: I attended school and tertiary education normally.

The experience was affected by my nature of course, but it helped me develop adequate (though not good), social skills.
I think getting used to NT's "organically", and accepting that they are the norm, was an important and positive part of my personal development. I'm glad my life worked out that way.

Of course if I went back with my current level of social adaptation it would all be a lot easier and some things would be a lot more fun, but I think that's true for most of humanity

@Momof2
This difference is just evidence of the principle: "if you've met one Aspie you've met one Aspie".
My (unprovable) opinion is they we all have something in common, but that otherwise we vary as much as any similarly large random group of people.

In terms of your post: I can't say whether your psychologist is right about your son being ND, but I think she should have kept her mouth shut regarding video games and missing school.
Both of these can be bad for some Aspies, and they can be very bad for people with certain common associated conditions (notably ADHD-I, which your son may well have).
IMO your judgement as to whether those are good or bad for your son is as good as (quite likely better than) your psychologist's.

An aside - this kind of discussion often brings up an associated memory: that there was a time when physicians (supposedly) thought Opium was a universal cure (panacea). It certainly looks like one at first glance, and makes things easy for the healer.
But it only suppresses the symptom the patient dislikes the most, and in most cases doesn't help otherwise.

IMO psychologists are currently at that stage with "high-end ASD1's".

Definitions are vague and definitely severely flawed. The cause is unknown. Diagnosis is almost entirely subjective, difficult, and fairly inconsistent. There are no simple treatments, no full treatments, and many of the partial treatments, like ABA, are morally repugnant at best.

Professionals can certainly help, but subjects and/or their guardians need to be very engaged in what's going on, or they may find the cure is worse than the issue.

Thank you so much for your response,
I completely understand where you are coming from. My son is also a type 1 diabetic and I’ve learned through that where individuals even if diagnosed are still individuals and have their own unique needs and requirements.
The biggest struggle is searching for the “right” thing to do but that is such a large scope as there is no right or wrong way.
I’ve raised him for 12 years I know what stresses him and what makes him more relaxed, however if we don’t push his boundaries a little I fear he will stop trying.
That’s what I’m hoping we can accomplish with the school, maybe try keeping him more active so he’s not “bored” but still getting him to try his best with the school system he has.
Online schooling could be an option, but I fear if he is at home himself he would get distracted or try to rush through so he can do what he wants to do instead.
I’d love to be home with him to help with that, but the reality is without supports both my husband and I need to work to provide the best life possible for our children. Not to mention benefits to help with his diabetes and possible ASD diagnoses.

 

[Duna]

Now I do agree on the acceptance and we will stop putting pressure to make friends and try to make things less stressful for him.

Please do. I was under that pressure of making friends, had even to attend day care for that reason, and it left me traumatized.

 

[Momof2]

Welcome. Ultimately, each person is unique and the best approach for them would be whatever best takes into account their strengths, while also encouraging them.

Two books which I'll suggest which might help with providing some insights are:

Uniquely Human

A groundbreaking book on autism, by one of the world's leading experts, who portrays autism as a unique way of being human--this is "required reading....Breathtakingly simple and profoundly positive" (Chicago Tribune). Autism therapy typically...

www.autismforums.com

Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew...

Part memoir, part guide, and part love letter, Sincerely, Your Autistic Child is an indispensable collection that invites parents and allies into the unique and often unheard experiences of autistic children and teens, highlighting how parents...

www.autismforums.com

If you're able to, it would probably be best to try to get a diagnosis as soon as possible as that would help open up access to funding and supports (which of course vary by jurisdiction).

Thanks so much for your recommendations and advice!

 

[Momof2]

The dual blessing and curse of an intelligent child?

I was a straight A student. The academic work was too easy, too boring, tailored for kids that in year 10 are still counting on their fingers and can't tell you the 6 times tables. They were teaching me nothing but expecting me to learn how to socialise with my tormentors.

I wagged school 3 days out of every 5. I'd sit down the end of the street and wait to see Mum drive to work, then I'd go home again. No teacher ever mentioned this to my parents, I think they were happier when I wasn't there. It wouldn't have made any difference if my parents did know, once my mind is set there's no altering it.

I learnt more from my parents and grandparents than I did from 12 years of the education system.

This sounds a lot like how my son feels, he would love if he could just go - get the required work done and leave.
And once he sets his mind to an idea or way of thinking he makes it happen.
I feel the school also is not wanting to deal with him, which is what hurts the most, everyone thinks he is a “problem child” but he 100% is not and just has his own way of thinking.

 

[Outdated]

There seems to be a difference in the way people with autism mature. In many ways as a child I was quite adult, certainly in my academic abilities. What the neurotypical world refused to accept was that I was simply not capable of the social maturity they expected of me.

I was even held back a year at school because I was "socially immature" but from my point of view it was all the other kids who were immature, and half the teachers as well.

Trying to force me to "socially adapt" was pointless, it was something I was simply not capable of. In a school situation that is. Once I got out in to the real world it was an entirely different kettle of fish.

Later in life I changed vocations and I noticed a huge difference between the world that I was used to and how so many others live. I was a tradesman, in trade circles all that matters is ability and reliability. No one cares if you're a little bit strange, production is the bottom line. I lived very well in that world.

Later in life I tried working in commercial and office environments and found exactly the same social issues that I'd had in school, where a lot of people have some weird idea of a hen pecking order, some weird social hierarchy, and I was expected to meekly step in to the position others assigned to me. That is something I am still not capable of.

[Edit] just an afterthought - It might not be a silly idea to show your son some of the posts in here and ask him what he relates to and what he doesn't. Some of our words might help him describe to you what goes on in his head.