Sending "recovered" ASD kid to college

[Anonymous]

Not the OP, but we are in the semilar sitution. DC was not diagnosed with anything before she went to college. Failed school. Diagnosed with ASD,is home and doing nothing. Any suggestion for therapist?

[Anonymous]

Anonymous wrote:I'm not sure if I should post here or in the college forum, but I'll start here.

If you sent a "recovered" or high functioning ASD kid to college, would you mind sharing your experience.

I am on the verge of a nervous breakdown getting DD ready to go to college. She no longer has a diagnosis, but has many issues related to her previous ASD -- disorganization, lack of focus, in particular. DH and I have had to drag her through every single aspect of enrolling her in her small liberal arts college.

She's nasty and condescending to both me and DH when we help her, but she cannot accomplish a single task on her own, from organizing her clothes, to filling out health forms, to registering for classes, to emailing her roommate to let her know what she's bringing, etc. etc.

She has a summer job, but stays up late at night on Facebook or just spacing out talking to herself, so she's tired and can't drag herself out of bed in the morning to make a healthy breakfast or lunch, both of which she must eat because of her health issues. She doesn't exercise and forgets to take her supplements, so her physical and mental health is deteriorating.

Tell me, please, parents, do your ASD kids pull themselves together in college, or do they fall apart? I worry DD will not eat/sleep/take care of her health and not notice her deteriorating health/mental health issues, and will spiral downward very quickly. She is very arrogant, and does not think anything is wrong with her, especially since she no longer has an ASD diagnosis.

I feel like I'm in a lose-lose situation. No matter what I do--help DD or stand back--I will suffer.

Thanks for any advice.

Does she see a therapist to help her with rigidity and anxiety? Has she established a relationship with her colleges Office of Disability Services? They may have a freshman group to help in the transition to college. Have her contact them now, before she leaves.

Otherwise, you may want to consider a gap year so she can learn more independence. It has to have a goal and structure though- not just hanging out at home for a year.

[Anonymous]

OP - So have any of these posts given you pause to consider your decision or to maybe take a step back in how you will transition DD to the college setting of at least 'your choice'?

My posts above are a compilation of personal in terms of having a very high performing daughter go off to college 20 years ago and soon be told that we had sent a 12 year old to college in terms of some emotional lack of development. She pulled out early in the semester of her sophomore year and the insurance we had saved us thousands of dollars, and the fact that she had AP credits kept her place in school. Then later after about 1.5 years of great schooling she once again hit the wall at Thanksgiving time in her senior year with anxiety, lack of sleep etc. and somehow was home for six weeks over Christmas and pulled it together once again. So from that aspect I can write about the impact on DD and on the family unit itself. And studies were never her issue as she graduated magna cum laude - part of the "perfect girl" drive within herself. We can all laugh at it now, but looking back when she did not know how to operate her alarm clock, we should have known something was amiss.

My posts are also really from a broader context across all disabilities as a parent being interested in the issue of transition for teens with a wide array of disabilities and from knowing other families and seeing what has worked and what does not work. You can't wish away a disability or thing that college will be a magic erase board. Also there are times that college is simply four years away that are putting off the inevitable issue of how one will transition from the family unit to a full, independent life of one's own. We also have a DD with Down syndrome who does reside with us and needs a level of oversight (not direct care) that will ensure she will be living with us for some time unless some magical wand of funding comes from above!! However, in her case we knew that the college experience was not an option, and so focused on skills need to obtain a job in her high school and post high program through age 21. She was equipped and ready to work and has held a part-time job for ten years in a college dining hall. She also volunteers one day a week and enjoys socializing with a college aged peer (though she is 30). In between we have a third daughter who did very well navigating life between the other two and is a wonderful pediatric physical therapist. My point is that staying within the family structure is a need that some young adults may have, but many others will be able to move on - BUT not necessarily right at age 18 or going right off to a four year college.




I also write from the point of view of a professor's wife. DH was the kind of professor you hoped to meet who was more than understanding based on the wide array of performance of our three daughters and the wonderful support our older daughter had gotten at her college. ***However, to give accommodations, one has to know about them ie from the student.

The statistics in general point out that mental health issues often occur for the first time in late teens and early 20s and often the varying pressures of college and grad school life are the pressure points that tip the balance. Issue may have been there in high school, but with family unit. much of ADLs being taken care of by others, structure of high school and the busyness of life for a teen to get into college (school work, homework, extra-curricular activities, volunteer work or paid job etc.), there is often little time for "open time." Then you turn around and you are literally deposited at college and "the world of open time" ahead of you for only you to decide what to do with and how to live. And then things come crashing down. It is this experience that you really want to try to avoid for any young adult.

[Anonymous]

Anonymous wrote:[quote=Anonymous]I have to agree with 14:27. Think about the fact that there is some unsuspecting teenage girl out there who is just hoping to get a nice roommate and have a good college experience. Knowing what you know about living with your DD, it sounds incredibly unfair to both girls to put them in a position where they will probably end up hating each other. Sure, many 18-year-olds are hard to live with, but what you have described sounds extreme. She does not sound capable of being a good roommate even if she wants to. At the very least, petition the school for a single. If you stick with a double I feel awful for the poor girl who has this coming for her freshman year, and also for your DD. The roommate situation can truly be the make or break for a positive experience at college, and a bad roommate situation is HELL for everyone.

Parent of high functioning Aspie/ADHD/GAD who is in college. Honors kids in high school. We were completely blown away with how difficult the transition was for DS to enter college because he had done so well in high school and on travels abroad. IMHO, if your child is on the spectrum, they will always be autistic. It is much more apparent now that DS is high functioning Aspie (autistic) than when a child. When applied disclosing all, worked with the office of disability services, got a single room with a shared bathroom with a R.A. (who turned out to be more of a wreck than our child). DS just spiraled down and slept all the time (very common in these situations). We had to get ODS involved. WE scheduled times for organizational meetings. ODS met with faculty and explained issues and need for extra time. Tutored up. Made use of the writing center at the University. We even had to call and wake DS up. Fortunately DS's university is close-by so we could "rescue" from time to time. Everything OP describes is my ASD kid. I think your tester was wrong and that you really need to quickly talk to ODS at your university and have meetings now. ODS most likely will require fresh testing if not done within the last three years. You take that testing in to ODS along with prior testing and any IEPs (they don't apply but show a record) and ODS works with you to get a reduced workload (very important) and whatever accommodations your child needs. You must have your child sign away their privacy rights on the FERPA form or no one at the university will be able to talk to you and you will experience what my sister and other friends have experiences - the letter from the university saying your kids has not been attending classes, is failing, and is not invited to return next term. If your arrogant child will not do that, then you are not going to pay for this very expensive adventure and they can go to community college. You will find your child will have great difficulty self-regulating, taking care of sleep issues, eating right, washing themselves and exercising. You will probably also find out that they cannot write a comprehensive academic paper without tutoring. I wish you the best of luck, but please call ODS at your university now (August is good time to work this out) and explain the situation. They can tell you if you need new testing and will usually provide a list of local testers they like. You need to get on this right away. Our first two years of college were hell and took much out of DW and me and attention away from other SN kids - we didn't see it coming.

OP here. Thank you for this very detailed post, PP. This is exactly what I fear will happen.

I have not gotten back to this thread because I've been trying to pack for DD, who is fighting me every step of the way!! I find myself crying every day, both from fear of letting her go to college, and anger at how difficult she is to deal with.

For those who suggested a gap year, I know that would have been right for DD, but she refused to consider it. We pushed her, but she did nothing about it, and eventually told us she wanted to go to college. She really needs structure, and could not structure a gap year for herself.

We've decided to send her to college, and let her fall on her ass if it comes to that. I'm doing everything I can to prevent that, but I don't think keeping her at home will help anything. She's super-smart, got very high grades, test scores, stellar recommendations, etc. in high school, where she functioned pretty well. She's also a varsity athlete.

I've contacted the disability office at her school, and they have agreed to give her the accommodations she got in high school, even without her diagnosis (which wasn't an ASD diagnosis, BTW. Hard to explain, but she really has no diagnosis at the moment.) I've spoken with her about psychological services at her school, which are free and available to all students. I don't think she'll reach out to them, though. She did sign the FERPA, so we can get info about her from the school. I dread those phone calls.

She went to private school so had no IEP. I'm not sure what kind of testing to do at the moment. The college's disabilty office said we should wait and see how she does, and if she gets into difficulty, they will recommend testing. That doesn't sound very proactive to me, but I feel like my hands are tied at this point.

I did speak with several school psychologists, but they would administer IQ tests and a battery of (something) Johnson (?) tests as well as a reading test. I can't see that paying $1,500 for those tests will reveal anything useful about DD, except that she's smart, which we already know.

Parents, can you suggest other types of testing? Other suggestions?

Anyone else, please tell me your story. Thanks.

[Anonymous]

I would recommend calling Dr. David Black at CAAT: http://caatonline.com

I've only worked with him as the parent of a younger child, but he's really fabulous and knows a tremendous amount about kids on the edge of the spectrum. He also leads a social skills group for teens/young adults and so might have ideas of how best to support her and what testing (if any) might be appropriate.

[Anonymous]

OP, have you sat down and really talked to her (I am assuming you did) about if she really wants to go. I do not agree with a gap year but she may need 2 years of community college or community college till you can get her into a local university where you can give her the support she needs.

[Anonymous]

Anonymous wrote:Not the OP, but we are in the semilar sitution. DC was not diagnosed with anything before she went to college. Failed school. Diagnosed with ASD,is home and doing nothing. Any suggestion for therapist?

Where are you located?

My kid sees Scott Hykin in Bethesda, and this kind of situation is a specialty of his.

[Anonymous]

Anonymous wrote:

Anonymous wrote:[quote=Anonymous]I have to agree with 14:27. Think about the fact that there is some unsuspecting teenage girl out there who is just hoping to get a nice roommate and have a good college experience. Knowing what you know about living with your DD, it sounds incredibly unfair to both girls to put them in a position where they will probably end up hating each other. Sure, many 18-year-olds are hard to live with, but what you have described sounds extreme. She does not sound capable of being a good roommate even if she wants to. At the very least, petition the school for a single. If you stick with a double I feel awful for the poor girl who has this coming for her freshman year, and also for your DD. The roommate situation can truly be the make or break for a positive experience at college, and a bad roommate situation is HELL for everyone.

Parent of high functioning Aspie/ADHD/GAD who is in college. Honors kids in high school. We were completely blown away with how difficult the transition was for DS to enter college because he had done so well in high school and on travels abroad. IMHO, if your child is on the spectrum, they will always be autistic. It is much more apparent now that DS is high functioning Aspie (autistic) than when a child. When applied disclosing all, worked with the office of disability services, got a single room with a shared bathroom with a R.A. (who turned out to be more of a wreck than our child). DS just spiraled down and slept all the time (very common in these situations). We had to get ODS involved. WE scheduled times for organizational meetings. ODS met with faculty and explained issues and need for extra time. Tutored up. Made use of the writing center at the University. We even had to call and wake DS up. Fortunately DS's university is close-by so we could "rescue" from time to time. Everything OP describes is my ASD kid. I think your tester was wrong and that you really need to quickly talk to ODS at your university and have meetings now. ODS most likely will require fresh testing if not done within the last three years. You take that testing in to ODS along with prior testing and any IEPs (they don't apply but show a record) and ODS works with you to get a reduced workload (very important) and whatever accommodations your child needs. You must have your child sign away their privacy rights on the FERPA form or no one at the university will be able to talk to you and you will experience what my sister and other friends have experiences - the letter from the university saying your kids has not been attending classes, is failing, and is not invited to return next term. If your arrogant child will not do that, then you are not going to pay for this very expensive adventure and they can go to community college. You will find your child will have great difficulty self-regulating, taking care of sleep issues, eating right, washing themselves and exercising. You will probably also find out that they cannot write a comprehensive academic paper without tutoring. I wish you the best of luck, but please call ODS at your university now (August is good time to work this out) and explain the situation. They can tell you if you need new testing and will usually provide a list of local testers they like. You need to get on this right away. Our first two years of college were hell and took much out of DW and me and attention away from other SN kids - we didn't see it coming.

OP here. Thank you for this very detailed post, PP. This is exactly what I fear will happen.

I have not gotten back to this thread because I've been trying to pack for DD, who is fighting me every step of the way!! I find myself crying every day, both from fear of letting her go to college, and anger at how difficult she is to deal with.

For those who suggested a gap year, I know that would have been right for DD, but she refused to consider it. We pushed her, but she did nothing about it, and eventually told us she wanted to go to college. She really needs structure, and could not structure a gap year for herself.

We've decided to send her to college, and let her fall on her ass if it comes to that. I'm doing everything I can to prevent that, but I don't think keeping her at home will help anything. She's super-smart, got very high grades, test scores, stellar recommendations, etc. in high school, where she functioned pretty well. She's also a varsity athlete.

I've contacted the disability office at her school, and they have agreed to give her the accommodations she got in high school, even without her diagnosis (which wasn't an ASD diagnosis, BTW. Hard to explain, but she really has no diagnosis at the moment.) I've spoken with her about psychological services at her school, which are free and available to all students. I don't think she'll reach out to them, though. She did sign the FERPA, so we can get info about her from the school. I dread those phone calls.

She went to private school so had no IEP. I'm not sure what kind of testing to do at the moment. The college's disabilty office said we should wait and see how she does, and if she gets into difficulty, they will recommend testing. That doesn't sound very proactive to me, but I feel like my hands are tied at this point.

I did speak with several school psychologists, but they would administer IQ tests and a battery of (something) Johnson (?) tests as well as a reading test. I can't see that paying $1,500 for those tests will reveal anything useful about DD, except that she's smart, which we already know.

Parents, can you suggest other types of testing? Other suggestions?

Anyone else, please tell me your story. Thanks.



If you decide to do testing, you need to get neuropsychological testing, rather than psychoeducational testing which is what a school psychologist can offer. A neuropsych will include things like attention, executive functioning, anxiety, etc . . .

[Anonymous]

Be warned that some Aspie kids (ours included) may self medicate with alcohol. Apparently there are a really high percentage of Aspies that are alcoholics. As an Aspie myself, I can tell you that I have fewer sensory issues when I am buzzed, and can also talk to regular people -- mostly because alcohol makes you stupid. Talk to your kid about alcohol. Give her the facts about alcohol and Aspies. Tell her you understand why it's tempting. Then tell her why it's stupid.

[Anonymous]

OP again with questions for PP.

Why couldn't your child write a paper in college without tutoring? Did he have tutoring in high school?

DD has never had tutoring. She's always done well in school, which is another reason she's so arrogant.

But at the same time, she can't get organized to get ready for college. I've given her packing lists, and she does not pack a single item until I am standing over her. She has this magical thinking that life will be perfect when she's away from her nagging parents!!

She truly is ASD, I know, but she's been very difficult to diagnose. We've taken her to a gazillion specialists and she's had loads and loads of tests, but her only diagnosis was a learning disability and some allergies and metabolic issues, all of which are now "normal" so DD thinks she is too. She's not, as you can see from my initial post.

Please, keep posting parents. It truly helps to hear from others who have been in this situation if only to help me steel myself for the worst. Thank you again.

[Anonymous]

OP again. Thanks 16:15. Neuropsych is the word I've been looking for. DD's high school kept directing me to psychoeducational testing, which doesn't seem to fit.

But even with neuropsych testing, I fear that DD will pass all the tests with flying colors, as she usually does. Is it possible for a psychologist to simply sit down with her and talk with her, rather than going through a bunch of tests? She does have anxiety, but it has not been diagnosed, just observed by her high school, which gave her accommodations based on her history and observations of her stress. But she's been so high functioning in high school that she got great grades with very little support. Now, I fear she's going to fall into a huge pit in college!!

[Anonymous]

Honestly, I'm wondering how she got into college if she's this disorganized and apathetic. I don't mean she doesn't belong at college, but rather the actual logistics of registering for and taking standardized tests, sending results to colleges, completing the applications, drafting and submitting the essays, etc. Not to mention choosing where to apply.

Did you do all of this for her? If not, then she can probably hack college.

[Anonymous]

Why are you packing for her? Making lists for her?

I have a much younger kid with Asperger's but my mother, FIL, brothers, DH, etc would all qualify for the diagnosis.

Tell her the date she is to leave for college. Give her a "to-do" list if you want (she should be coming up with one herself, frankly) and leave her alone until you drive her there.

If you DD was a good student who got good grades, she should be capable of packing.

The all above mentioned relatives all went to Ivy League colleges (except 1 who went to Hopkins) and did fine, btw. Enough to get into top grad/law/med schools.

[Anonymous]

Anonymous wrote:OP again. Thanks 16:15. Neuropsych is the word I've been looking for. DD's high school kept directing me to psychoeducational testing, which doesn't seem to fit.

But even with neuropsych testing, I fear that DD will pass all the tests with flying colors, as she usually does. Is it possible for a psychologist to simply sit down with her and talk with her, rather than going through a bunch of tests? She does have anxiety, but it has not been diagnosed, just observed by her high school, which gave her accommodations based on her history and observations of her stress. But she's been so high functioning in high school that she got great grades with very little support. Now, I fear she's going to fall into a huge pit in college!!

The tests are pretty subtle and detailed, and there is a lot of time spent talking. I think they're worth doing.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP again. Thanks 16:15. Neuropsych is the word I've been looking for. DD's high school kept directing me to psychoeducational testing, which doesn't seem to fit.

But even with neuropsych testing, I fear that DD will pass all the tests with flying colors, as she usually does. Is it possible for a psychologist to simply sit down with her and talk with her, rather than going through a bunch of tests? She does have anxiety, but it has not been diagnosed, just observed by her high school, which gave her accommodations based on her history and observations of her stress. But she's been so high functioning in high school that she got great grades with very little support. Now, I fear she's going to fall into a huge pit in college!!

The tests are pretty subtle and detailed, and there is a lot of time spent talking. I think they're worth doing.

Also, a big part of the testing is family history, which would include your descriptions of your daughter's actions/behaviors.