Whether to have my son tested

[wonderingmom]

Hello! I’m really happy to have found this forum. I’m the mom of two boys, 15 and 13, and I’m looking desperately for input from real people (as opposed to psychologists in offices - we’ve done that too, but I’ve gotten frustrated with the way the child seems to get boiled down to a collection of deficits and then the parent is made to feel like the clock is ticking and everything depends on this or that intervention with this or that specialist - we’ve done some of that, and it hasn’t always felt like the right thing).

So, I’m struggling with the question whether or not to have my 15-yr-old tested for ASD. He has an ADHD diagnosis, and I’m pretty confident that if he were tested he would be diagnosed with ASD - he’s socially awkward, has a tendency to get focused on narrow interests, has sensory sensitivities. We’ve been homeschooling since his 4th grade year, and he has a great group of friends - some NT, some maybe not but undiagnosed - so he’s not isolated, and I think his friendships are quite functional and mutual.

But the last year he’s kind of withdrawn - school work is getting harder, taking classes is causing anxiety, activities that some friends are doing are outside his comfort zone. The psychiatrist who prescribes his ADHD meds is encouraging us to have him tested. I’m on the fence. I don’t know whether an autism spectrum diagnosis would tell us anything we don’t already know. I don’t know if it would lead to any different and better way of doing things. I’m wary of having to deal with more professionals who’ve been trained to fix behaviors but don’t have any intuition about what’s going on under the surface - this is a really big one for me. I just don’t know exactly what there is to be gained from having the diagnosis. I haven’t talked to my son about any of this. If I knew that having the diagnosis would be empowering to him and give him a better understanding of himself, I’d go ahead in an instant. What I don’t want is for him to feel burdened by another label.

Thank you so much for listening as I go on and on. I’d be really grateful for any input.

 

[Aspychata]

First - thanks for homeschooling him. My child loved this and we pursued her interests using this route. She bounced around a little bit after 5th grade and ended up in a performing arts high school with a bunch of socially awkward teens like her. It was a match in heaven and they provided counseling because her dad and l were splitting up.

I prefer not giving her this label because it would limit her perception of how she sees herself. l don't like labeling them. She is doing well and l am thankful.

Please look for things he wishes to do and maybe a great high school to aim for. She did retract during teenage years. She was more emotional. Decided to become a guy. l sailed thru not drawing attention, respecting her choices and she finally emerged from the teenager cocoon back to her female self. It will be rough, bumpy road as they strive to find where they belong and it's harder l feel then in my lifetime.

 

[Magna]

Welcome! Hopefully we can get responses from autistic people who were diagnosed as children or adolescents as to whether they found knowing at that time that they were autistic helped them or not.

I don't know that my responses will answer any of your questions but hopefully they'll be of some help.

I was diagnosed as autistic at a late age (48) and receiving the diagnosis was one of the best things that's happened to me in my life because it explains so much and has been the catalyst to me having far more peace in my life than I'd ever had before. I encourage any adult who believes they might be autistic to seek an assessment.

I'm also a parent and one of our children was diagnosed as autistic around age 10. As parents, we wanted to know for reasons including an IEP for schooling to help him learn better by acknowledging his sensitivities. Neither my NT wife nor myself had ANY negative/sad feelings over his diagnosis. Naturally our household is a very autism friendly and autism supportive household. Other than when we told him and his siblings that he was autistic and explained what that was and what that wasn't, we haven't mentioned anything to him about his autism and he's not labeled as such at home. We only talk about his sensitivities and behaviors for what they are. We try to have our home be a safe and positive place for him to be himself.

To clarify what I mean by "sensitivities and behaviors as they are":

Like me, he's very sound sensitive. We don't emphasize that he's sound sensitive because he's autistic, we simply focus on the sound sensitivities and how to manage them. It's the same with his smell sensitivities. Behaviors (e.g. obsessing, one track thought/not letting go of something that bothers him, meltdowns) it would serve no purpose to be thematic with any of that by prefacing those things with autism as a label.

Internationally known autistic woman Temple Grandin says the same thing which is basically while autism is a part of who she is, it doesn't define her. She's a professor, a speaker, a cattle industry professional, a woman for those things as they are, independent of her autism rather than being exclusive to it.

Would a 15 year old feel empowered knowing they were autistic if in fact they are? I think it would depend on the child and the kind of support network (or lack thereof) around them. Again, I hope members here who were diagnosed prior to being adults will post here.

I can't accurately imagine how I would have reacted as a 15 year old if I'd been diagnosed then so I won't try.

 

[Aspychata]

My daughter is attending college and may become a psychiatrist like her father.

 

[wonderingmom]

Thanks so much, Aspychata and Magna. It’s so helpful for me to know how other people think about and handle these questions. I hope too that others will respond.

 

[wonderingmom]

My daughter is attending college and may become a psychiatrist like her father.

That’s fantastic!!

 

[clg114]

Welcome to Autism Forums! Understanding is the key here. A diagnosis could help both of you to understand ASD better. Counsoling can help him to work with his weakness's and take better advantage of his considerable strengths. Be sure to get a psychiatrist who has experience with ASD.

 

[wonderingmom]

Welcome to Autism Forums! Understanding is the key here. A diagnosis could help both of you to understand ASD better. Counsoling can help him to work with his weakness's and take better advantage of his considerable strengths. Be sure to get a psychiatrist who has experience with ASD.

Thank you, cig114. Yes, if we do this I will definitely make sure we’re dealing with people who have ASD experience. What I wish is that there were more people on the spectrum actually working in the field of psychology and counseling - I think part of my reluctance comes from the fact that so many of the psychologists we’ve dealt with so far have been so EXTREMELY neurotypical that I feel like I’m explaining my son’s behavior to them rather than the other way around. These weren’t people who were specialized in ASD, but I wonder, do people who specialize in ASD tend to be any more imaginative and spontaneous and intuitive than those with other specialties?

 

[Magna]

Thank you, cig114. Yes, if we do this I will definitely make sure we’re dealing with people who have ASD experience. What I wish is that there were more people on the spectrum actually working in the field of psychology and counseling - I think part of my reluctance comes from the fact that so many of the psychologists we’ve dealt with so far have been so EXTREMELY neurotypical that I feel like I’m explaining my son’s behavior to them rather than the other way around. These weren’t people who were specialized in ASD, but I wonder, do people who specialize in ASD tend to be any more imaginative and spontaneous and intuitive than those with other specialties?

It depends on where you're located, of course, but I would recommend looking up the autism society of your state. If it's close to you it might be worth traveling to for an assessment. Or perhaps they'd now be doing remote assessments and distance wouldn't matter. That's where my son and I received our assessments and where I continue to receive occasional help as needed. We love our autism society and the therapists are wonderful, knowledgeable and most importantly to me, pro-autism (ie they do NOT view autism as a something someone needs to be "cured" of).

 

[wonderingmom]

It depends on where you're located, of course, but I would recommend looking up the autism society of your state. If it's close to you it might be worth traveling to for an assessment. Or perhaps they'd now be doing remote assessments and distance wouldn't matter. That's where my son and I received our assessments and where I continue to receive occasional help as needed. We love our autism society and the therapists are wonderful, knowledgeable and most importantly to me, pro-autism (ie they do NOT view autism as a something someone needs to be "cured" of).

This is really good to know - sounds genuinely helpful. We live in the DC Metro area - I will definitely take a look at what exists around here (I’m sure there’s plenty).

 

[Giraffes]

As you yourself and others have shared it's very important to have a informed person when seeking diagnosis, if i relate my own experience i went through life not understanding who i was and how i reacted to situations, when i went to my GP he 'so didn't get it' and referred me to a LD specialist and someone in the field of mental health support, i don't have a learning difficulty and yes i experience anxiety and depression but after these 'experts' rejected my concerns i paid for my diagnosis at age 40, so it's a hard decision, and i was pleased to discover your son was home schooled and has friends and family who 'get' who he is, my daughter is in her 30's now and to me clearly autistic but not diagnosed, part of me wishes i'd regonised this as she may have had support with education and accepting herself a little more, my Grand-Daughter who's 5 i believe is also Autistic and with my recent insight and the love of her parents she is a confident and happy child, i hope you 'reaching out' here is of use to you and whatever you decide please if you wish continue to post as i had found understanding here far greater than those 'medical experts'

 

[Tom]

I'm not sure there is any 'right' way exactly. Your son sounds a lot like what my own was like, and his situation, except that he didn't materially withdraw. So we didn't intervene and rolled with it. He remains 'different' as I was, but has done well. I think a big part of not seeking diagnosis for us though, was we both went into the military as careers and a diagnosis would be harmful to that. The only thing I would add is that it is very important to stay very connected and available to help - but at the same time giving them their space and letting them learn and even make mistakes.

 

[wonderingmom]

As you yourself and others have shared it's very important to have a informed person when seeking diagnosis, if i relate my own experience i went through life not understanding who i was and how i reacted to situations, when i went to my GP he 'so didn't get it' and referred me to a LD specialist and someone in the field of mental health support, i don't have a learning difficulty and yes i experience anxiety and depression but after these 'experts' rejected my concerns i paid for my diagnosis at age 40, so it's a hard decision, and i was pleased to discover your son was home schooled and has friends and family who 'get' who he is, my daughter is in her 30's now and to me clearly autistic but not diagnosed, part of me wishes i'd regonised this as she may have had support with education and accepting herself a little more, my Grand-Daughter who's 5 i believe is also Autistic and with my recent insight and the love of her parents she is a confident and happy child, i hope you 'reaching out' here is of use to you and whatever you decide please if you wish continue to post as i had found understanding here far greater than those 'medical experts'

Thank you so much...all of these comments help me immensely. I’m sorry you had such a difficult time with “experts” too. Your granddaughter is really lucky to have a family who understands and appreciates her!

 

[paloftoon]

Getting a diagnosis can be helpful for certain job programs that cater toward this. But it is also expensive to do so generally and there is no guarantee that the test results would verify such a diagnosis. If your son is planning on being something like in the military, I agree it would probably be harder to get in having such a diagnosis.

 

[wonderingmom]

I’m pretty sure the military isn’t in his future (I’m giggling), so that’s probably not a concern. He’s strong in nonverbal/spatial skills, sort of stereotypical Aspie profile I guess... so maybe there would be job programs in fields that are a good fit for him - I didn’t know such things existed, so thank you for that information!

 

[wonderingmom]

I'm not sure there is any 'right' way exactly. Your son sounds a lot like what my own was like, and his situation, except that he didn't materially withdraw. So we didn't intervene and rolled with it. He remains 'different' as I was, but has done well. I think a big part of not seeking diagnosis for us though, was we both went into the military as careers and a diagnosis would be harmful to that. The only thing I would add is that it is very important to stay very connected and available to help - but at the same time giving them their space and letting them learn and even make mistakes.

Yes to both the staying connected and the giving space - I completely agree. He needs to feel supported but not controlled. He’s pretty good at making it clear to me where the line is

 

[Tom]

I’m pretty sure the military isn’t in his future (I’m giggling), so that’s probably not a concern. He’s strong in nonverbal/spatial skills, sort of stereotypical Aspie profile I guess... so maybe there would be job programs in fields that are a good fit for him - I didn’t know such things existed, so thank you for that information!

The military certainly isn't for everyone, NT or ASD but right now it is very difficult if not impossible for an autistic to serve even if they wanted to (in the USA). But the military may change it's views on autism in years to come. Israel has taken the lead in this respect forming a unit specifically for autistics and giving them a chance to serve their country, a option previously denied them.

"Six years ago, three former Mossad agents launched an experimental Israeli Army program to recruit those on the autism spectrum, harnessing their unique aptitudes—their "superpowers," as one soldier puts it. The name of this big military success? Roim Rachok, Hebrew for "seeing into the future," and it may bring neurodiversity to the broader workforce."

The Israeli Army's Roim Rachok Program Is Bigger Than the Military

 

[menander]

I would ask him if he wants to be tested. It can be a double edged sword.

On one had, it may help them get services if they are open to the Dx. On the other, it can cause great shame and a feeling of being made wrong no matter how much "acceptance" is out there. It could also forever exclude him from certain jobs and even rights. In the US, it is automatic disqualifier for military. And Second amm rights, to be specific. I am not making a judgement either way, I am just saying the DX can cause ramifications.

I would ask him, tell him all the ways it could go and respect his decision.

 

[Ezra]

I'm not sure what would be gained form a diagnosis either. Usually a diagnosis at a later age is is based on the parent wondering what is wrong with their child, or the child wondering what is wrong with themselves. Like let's get this mystery solved.

I don't see that knowing for sure he is on the spectrum will make any difference in his situation. And he might end up with a diagnosis on his record that he doesn't want there when he becomes an adult.

 

[Crossbreed]

Be sure to get a psychiatrist who has experience with ASD.

^This^

Here is a list of autism-competent resources,

Autlanders, Thriving Outside of the Box: Finding Support Resources in the USA...

These weren’t people who were specialized in ASD, but I wonder, do people who specialize in ASD tend to be any more imaginative and spontaneous and intuitive than those with other specialties?

Yes.

And Second amm rights, to be specific.

Those aren't endangered by an ASD1 diagnosis, only if his co-morbid conditions were severe enough. It is the same bar as for NTs who have mental illnesses. Without those issues, we can own firearms, get driver's licenses, vote, etc. just like everyone else.