Possible new autism diagnosis in high school

[Anonymous]

My 10th grader DS has struggled all his life in various ways. He has had an ADHD diagnosis since first grade, along with a diagnosis of generalized anxiety disorder. From the time he was a toddler, I worried about him and knew he was different. However, despite my suspicions that he was on the spectrum, he has never received an autism diagnosis. When he was in preschool, I felt like he fit the profile in some ways for what we then called Asperger's. He has always been socially reserved/anxious, struggled to make casual conversation, used to have specific interests although that seems to have gone away over the years. He had a full neuropsych in first grade when he received the ADHD diagnosis, and the evaluator did not feel he had enough autistic traits to warrant a diagnosis. Since then, he has had less extensive evaluations and appointments with psychiatrists and psychologists over the years, and no one ever even brought up autism. His social issues seemed to improve by late elementary, and then when he was in middle school Covid hit, and really muddied the waters as far as what was normal socially. He definitely became more isolated during Covid and since starting high school, has withdrawn even more. It doesn't help that our school zoning is such that the majority of kids he want to middle school with now attend a different high school. He has expressed high levels of anxiety surrounding social situations, and is basically afraid to try. He does want friends, I think - just doesn't know how to go about it. He started individual therapy last summer to address the social anxiety, executive function issues, and low level depression I think he experiences at times. During my last check-in with the therapist, she mentioned revisiting the autism evaluation and recommended a place that specializes in autism diagnosis without going through a full neuropsych exam (since we know he has ADHD and we're not particularly worried about learning disabilities at this point). She felt that if he is on the spectrum, having that knowledge might lead to a level of self-understanding that is helpful to him. I will say that as my younger two (NT) children get older and I see their social lives and executive functioning skills develop, I understand more deeply just how different/delayed these skills are for my oldest.

I am wondering if anyone has been through late testing/diagnosis of autism in the teen years and what it meant for your kid. Were there additional therapies of interventions you felt were helpful at such a late stage? Was it helpful for your teen as far as self-understanding and awareness? If he has autism, I feel incredibly guilty and overwhelmed that we didn't know/understand earlier. Parenting him has been exhausting and I just want to get him on the right track for a fulfilling, independent life. I am scared and confused, and I want to do what's right for him.

[Anonymous]

As a parent of a dc dx with asd through a full neuropysch eval, I would get him another full one.

[Anonymous]

I have a lot of empathy for your situation OP.

For some kids getting a diagnosis is helpful and eye opening but for others it can go the other way. Almost everyone on this board will tell you more information is better but personally I think you already know his challenges and he knows his challenges so I'm not really sure how a diagnosis could help with practical matters.

What does he think of having ADHD? Is he one of those kids who embraces his differences and talks about it openly or is it something that is more difficult for him to acknowledge? Has he ever suspected himself of having ASD and wanting to get tested? Since he's in 10th I would ask him his opinion and let my child guide me.

[Anonymous]

I also wanted to say don't feel guilty and don't feel scared OP. A lot of kids with ADHD have social difficulties so any interventions would have been the same that you have already tried and many of those kids do really well until middle school or high school so a lot of social issues don't show up until then. Your timing is good!

[Anonymous]

Anonymous wrote: As a parent of a dc dx with asd through a full neuropysch eval, I would get him another full one.

And if you are local someone who makes that their specialty like Dr. Black.

[Anonymous]

Anonymous wrote:

Anonymous wrote: As a parent of a dc dx with asd through a full neuropysch eval, I would get him another full one.

And if you are local someone who makes that their specialty like Dr. Black.

But really has anyone come out of that office without a diagnosis?

[Anonymous]

It’s 100% normal and expected for you to feel overwhelmed and blame yourself for missing it if your son would receive a late autism diagnosis. I know; I’ve been there! But as our dc’s specialist said to us, there’s nothing to feel guilty about because if your dc is so high functioning that specialists didn’t catch it for years, he is too high functioning for ASD-specific interventions. You are treating symptoms as they appear and getting help for your son to improve in areas where he has deficits — which is exactly what you would have done had you had the diagnosis from the beginning. A diagnosis now wouldn’t alter the trajectory of your son’s life; it would just help him have a deeper understanding of himself. It’s an explanation, not a sentence.

[Anonymous]

It sounds like you addressed issues as they come up. Some clinicians are very hesitant to give a HFA diagnosis. Also, it may not has been as clear until social and academic demands increased with high school.

The diagnosis helped with insurance reimbursement. It helped us target the right interventions and make sure people had true expertise in the area (sometimes if they have happened to have clients with autism, they think they are expert, even if they aren't good with them).

I would make sure you are totally comfortable with the diagnosis before you share it with your teen and then get input from the therapists about how to share. I tested well, but had learning disabilities which to my parents was TRAGIC. When they told me I had a learning disability I picked up all their disappointment and sadness and felt broken. Luckily I did my own research on it and realized there are plenty of people with LDs doing just fine in the world and it was not worth them going into mourning.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: As a parent of a dc dx with asd through a full neuropysch eval, I would get him another full one.

And if you are local someone who makes that their specialty like Dr. Black.

But really has anyone come out of that office without a diagnosis?

Yes. My younger child went there when we suspected ADHD. He was not diagnosed with autism (or adhd).

But it makes sense that many seen in his office would be diagnosed with autism because people only seek him out when that's their primary concern (we only went there because my older child is autistic and was evaluated there).

[Anonymous]

Dear OP. I read most of this but couldn’t read it all because it’s too hard to read. More is known about ASD-1 (Asperger’s but that physician was a Nazi so it’s not used). My DD was diagnosed in her sophomore year of high school. There were warning signs from birth forward including her preschool teachers referral. There entire team at Johns Hopkins KKI ruled it out and only said “early signs of ADHD” which cannot be dx’d until age 6. My DD still has ADHD and ADHD plus a whole panoply of diagnoses. My DD is now at a therapeutic boarding school. It is heartbreaking not to have her home. Get your child testing, it could be helpful for SSI, and please don’t blame yourself. There’s no good way for parents like us to connect, but you’re not alone.

[Anonymous]

Anonymous wrote:I am wondering if anyone has been through late testing/diagnosis of autism in the teen years and what it meant for your kid.

Yes, we just went through neuropsych testing with Stixrud. Teen felt validated and that now they felt understood, but even so, immediately following diagnosis it has caused a huge mental upheaval for them — and frankly for parents too — in trying to come to terms with what it all means.

We had known OCD and GAD diagnoses which we’d been addressing for years and years but still ended up with our teen in what looked like a major depressive episode (but actually seems to have been autistic burnout): one day said they just couldn’t do it anymore, didn’t want to live anymore, then complete withdrawal, school refusal, suicidal ideation. During a partial hospitalization program and subsequent intensive outpatient program, both the psychologist and psychiatrist working with us recommended neuropsych testing to screen for autism.

Anonymous wrote:Were there additional therapies of interventions you felt were helpful at such a late stage?

Not so much therapies, but supports for developing self-reflection, self-knowledge, self-acceptance, self-advocacy so that we and they can identify and work towards realistic goals for their future.

Two books by late-diagnosed autistic people recommended to our teen were:

What I Mean When I Say I’m Autistic: Unpuzzling a Life on the Autism Spectrum by Annie Kotowicz [i would say this book is not a gender specific book]

I Am Autistic: A Workbook: Sensory Tools, Practical Advice, and Interactive Journaling for Understanding Life with Autism (By Someone Diagnosed With It) by Chanelle Moriah [again, i would say the content of this book is not gender specific; it is illustrated with line drawings/water color and has space for journaling]

Anonymous wrote:Was it helpful for your teen as far as self-understanding and awareness?

Yes.

Anonymous wrote:If he has autism, I feel incredibly guilty and overwhelmed that we didn't know/understand earlier. Parenting him has been exhausting and I just want to get him on the right track for a fulfilling, independent life. I am scared and confused, and I want to do what's right for him.

Starobin counseling in Maryland has a support group for parents of autistic children and another one for siblings as well as one for autistic adults (think it’s age 18 and up).

It is so exhausting for parents (and really the whole family). I encourage you to work on self-acceptance too. You clearly are a loving, caring parent.

[Anonymous]

Anonymous wrote:Dear OP. I read most of this but couldn’t read it all because it’s too hard to read. More is known about ASD-1 (Asperger’s but that physician was a Nazi so it’s not used). My DD was diagnosed in her sophomore year of high school. There were warning signs from birth forward including her preschool teachers referral. There entire team at Johns Hopkins KKI ruled it out and only said “early signs of ADHD” which cannot be dx’d until age 6. My DD still has ADHD and ADHD plus a whole panoply of diagnoses. My DD is now at a therapeutic boarding school. It is heartbreaking not to have her home. Get your child testing, it could be helpful for SSI, and please don’t blame yourself. There’s no good way for parents like us to connect, but you’re not alone.

Asperger was not a member of the Nazi party. Look it up. This is more

[Anonymous]

Lore^^

[Anonymous]

Anonymous wrote:Dear OP. I read most of this but couldn’t read it all because it’s too hard to read. More is known about ASD-1 (Asperger’s but that physician was a Nazi so it’s not used). My DD was diagnosed in her sophomore year of high school. There were warning signs from birth forward including her preschool teachers referral. There entire team at Johns Hopkins KKI ruled it out and only said “early signs of ADHD” which cannot be dx’d until age 6. My DD still has ADHD and ADHD plus a whole panoply of diagnoses. My DD is now at a therapeutic boarding school. It is heartbreaking not to have her home. Get your child testing, it could be helpful for SSI, and please don’t blame yourself. There’s no good way for parents like us to connect, but you’re not alone.

I remember years ago CNMC was more into giving autism diagnosis and KKI would give a menu of an anxiety disorder, ADHD and whatever before considering ASD and then a lot of people who came out with the menu dx from KKI (multiple diagnosis with symptoms of ASD) eventually often got the ASD diagnosis elsewhere. So even top places don't agree. When mine already had the HFA diagnosis a CNMC developmental ped who trained at Hopkins and had a son like mine, insisted it wasn't HFA and tried to take away the diagnosis. She explained my child was just very bright with a good memory and ADHD. We got another opinion and that person agreed HFA as did anyone else in the future. He also as not the genius she claimed. Above average is some areas, but not a misunderstood smartypants.

[Anonymous]

He's in 10th grade, so it wouldn't be at all odd for the therapist to discuss this with him and get his input.

My child was also a late diagnosis, though it was on our radar for years most evaluators and therapists didn't think there was enough there to pursue, but one consistently did. We didn't bother for a long time because there was no practical value, but once he was a teen we thought it might open some doors to resources for socializing and transition to adulthood. My son didn't have a dedicated therapist at that point, so I asked him what he thought. He was like "Oh yeah, I probably have that."

He is discouraged by his struggles, but he's not upset that they are called "autism". If anything, it helps him understand that his struggles are brain-based.