Possible new autism diagnosis in high school

Anonymous
I think it’s good to do now so that it’s documented before he moves into adulthood. There are less supports for adults who are diagnosed as adults. You have a little window here to get supports before they turn 18. Use it!
Anonymous
Anonymous wrote:I think it’s good to do now so that it’s documented before he moves into adulthood. There are less supports for adults who are diagnosed as adults. You have a little window here to get supports before they turn 18. Use it!


NP - what are the supports that can be received before 18 for late dx that disappear after 18?
Anonymous
Anonymous wrote:
Anonymous wrote:I think it’s good to do now so that it’s documented before he moves into adulthood. There are less supports for adults who are diagnosed as adults. You have a little window here to get supports before they turn 18. Use it!


NP - what are the supports that can be received before 18 for late dx that disappear after 18?


I am another poster. Curious with this too and hoping to get guidance.

What are the things that parents can put in place prior to 18? What are some interventions that can be helpful for late diagnosis? What social groups do they have for kids who are on the lower end of the spectrum?
Anonymous
I have a kid who was diagnosed in high school. One significant change for us is that he started giving himself more grace and so did teachers, family, and friends. When he's stuck, it's generally not instantly seen as a behavior problem; it's neurologic/autistic rigidity. We are lucky to have educators who see him with a different lens and come at him with the tools an autistic kid needs to move through it (coming up with a plan, dealing with discomfort, managing anxiety, etc.).

The same is true of family. They have been more understanding with the diagnosis. Mostly.

He's learning to manage tough things better himself too.

I started talking to therapists, consuming books, and listening to podcasts to figure out what would work. The information is really quite limited and mixed for these late diagnoses, especially coming out of covid. I didn't love any one source. Some was too juvenile. Some was way too accommodating.

It has NOT been easy. The road to get here was awful. I am glad that on our THIRD neuropsych someone finally figured this diagnosis out, and we could get to work on it. (PSA: brand-name and expensive is not always best in the DC area.)

Not every kid and every family is going to react positively to a diagnosis. I do think you really have to weigh your whole landscape.

I'm not sure what changes after 18, but just wanted to share how a diagnosis changed things generally for us. In talking to other parents a few years ahead of me, I do think in college it will help with accommodations for classes and housing to have the diagnosis. Also, it gives us a better sense of the types of schools we should be looking at.
Anonymous
I’m glad I found this thread!

My 16 year old son just had a neuropsych test done and they want to now test for autism. He has been tested twice before and received a diagnosis of low iq and adhd, not autism.

If diagnosed with autism at 16 (almost 17) what do I do to get him services?
Anonymous
Anonymous wrote:I’m glad I found this thread!

My 16 year old son just had a neuropsych test done and they want to now test for autism. He has been tested twice before and received a diagnosis of low iq and adhd, not autism.

If diagnosed with autism at 16 (almost 17) what do I do to get him services?


I wish I had a simple answer, but autism is an umbrella term that gives you some idea of possible challenges and possible strengths, but really the neuropsych eval and the professionals working with him will guide you best for his specific needs.
Anonymous
Anonymous wrote: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.


get an IEP and hold the school accountable for paying for services
Anonymous
Anonymous wrote:
Anonymous wrote: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.


get an IEP and hold the school accountable for paying for services


OP may have an IEP if there is already an ADHD diagnosis. You aren't going to get the school to pay for services unless you spend a small fortune on lawyers and that money is better spent getting the services outside of school. You could fight for services at the school, but too often they are mediocre at best and that rare time you get someone good, that person often moves on and isn't appreciate enough by the system. You can fight for better services at the school, but it takes a lot of time and effort and just because they finally do the right thing one year doesn't mean they will the next year. They are asked to the impossible with meeting the needs of students with a wide range of disabilities and sadly sometimes the solution is they group kids together with vastly different needs and only really address the needs or one kid in the group if that.
Anonymous
It’s so hard when it’s not black and white. My son got a inattentive-ADHD diagnosis but “borderline” for ASD, the doctor said he has the social issues of ASD but not the rigidity piece, so instead diagnosed his with “social pragmatic communications disorder.” Which while it makes sense, teachers and friends have no idea what that means so I just say “autistic traits.”
Anonymous
Anonymous wrote:
Anonymous wrote:I’m glad I found this thread!

My 16 year old son just had a neuropsych test done and they want to now test for autism. He has been tested twice before and received a diagnosis of low iq and adhd, not autism.

If diagnosed with autism at 16 (almost 17) what do I do to get him services?


I wish I had a simple answer, but autism is an umbrella term that gives you some idea of possible challenges and possible strengths, but really the neuropsych eval and the professionals working with him will guide you best for his specific needs.


Thanks!

I feel like such a failure as a parent and worry for his future. Why wasn’t he diagnosed earlier? It almost seems like it’s too late. Ugh…….he has one year of HS left to go and where does he go from there?
Anonymous
Anonymous wrote:
Anonymous wrote:I think it’s good to do now so that it’s documented before he moves into adulthood. There are less supports for adults who are diagnosed as adults. You have a little window here to get supports before they turn 18. Use it!


NP - what are the supports that can be received before 18 for late dx that disappear after 18?


I'm not 100% thought it was important for establishing eligibility for Social Security benefits?

Also I think it's helpful in requesting accommodations in college? Like a single room?
Anonymous
Similar situation. DS was just diagnosed at the age of 16 but it’s become more and more obvious to us as he’s gotten older so not a surprise.

The diagnosis doesn’t change anything right now. He has and IEP in place, get social skills training, etc.

It’s really college that it will probably have the most impact as we try to figure out where and what supports he needs. Apply for schools with autism programs or just find private supports that we hire individually to support him? Big decisions coming up
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