Need Information on Getting Some Assistance for Daughter with Aspergers

Updated on June 24, 2019
D.B. asks from Fayetteville, NC
7 answers

My daughter is now 24 and has not been officially diagnosed as having Asperger's, but I now know after all these years and going to all the specialist, starting at birth with obstetrician, then pediatrician who told me my child was deaf,(she wasn't and isn't) she did suffer some hearing loss and only has good sight in one eye, the neurologist, ophthalmologist (two eye surgeries) optician, psychologist, psychiatrist, speech therapists, endocrinologist, having bone age test, hormone shots,, seizures, etc, etc. Being labeled as developmentally delayed, needing IEP's (Individual Education Programs) throughout school, having not had a menstrual period as of yet, never holding a job, having emotional issues for which she was institutionalized twice in three years starting in 2014. I know from doing my own research on the subject that all these professionals did not connect the dots and properly diagnose my daughter. Now my question to this forum is where do I start to get her properly diagnosed and get her whatever medical services are available for this syndrome, some SSI or something, there is no health insurance for her at this point. If I were still in the workforce, I could carry her to age 26, but I am not. Who could/should I turn to for assistance?

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So What Happened?

Just taking this opportunity to thank those who took the time to offer comments and suggestions to my question. We are in the process of looking into a few avenues suggested. Again thanks.

More Answers


answers from Norfolk on

She is 24 years old and an adult.
Is she incapacitated and are you her legal guardian?
Do you have power of attorney to make decisions for her?
Does she want to see doctor(s) to be evaluated?
Because if you have no control over her and she doesn't want to - you can't make her.

You want to have her diagnosed as Aspergers for what purpose?
Are you hoping she will qualify for receiving disability?
If she was a young child and had been diagnosed then - she might have received therapies to help her development - but she's 24 now and I'm not sure what would apply at her age.

Perhaps you and your daughter can find help at one of these sites

5 moms found this helpful


answers from Miami on

There are disability attorneys who help people navigate this, but they are expensive. SSI and Medicare is what is out there, but it’s hard to get. I’m sorry you didn’t get proper diagnostics done when she was younger - it would have been easier.

It sounds like she has physical disabilities in addition to being neuro-atypical. Does she have a social worker assigned to her? If she does, start there.

5 moms found this helpful


answers from Portland on

I think you've had good advice on how to proceed with the getting some help with assistance from the moms so far, my question would be why do you feel she has Aspergers (I'm just not following based on what you've written here)?

My child was diagnosed with it (as being on the spectrum) and nothing you've written would suggest to me that this would be the case. In our case, (and I can relate to you), it was a misdiagnosis. However, they listed all these traits - none of which you've included here. Perhaps other moms could weigh in. I'm sure this is just a brief description you've included here, as it's just a post, but I'd be wary of doing your own diagnosis. I know it's hard not when you're not getting help, or to try to do your own research .. but it can also lead you down incorrect paths.

I hope you can get her the help she needs and also the financial support you're looking for, for her. Good luck :)

5 moms found this helpful


answers from Portland on

I think My grandson receives ssi, starting several years ago. He's now 16 and does get help from a county agency. That may be paid by ssi. A male young adult comes to his house after school for 3 days/week. This person helps him learn social skills. I don't know if this available for adults.

My brother, 60+, collects ssi because he is unable to work do to psych issues. The process to get approval took several months. He's received ssi for several years. I suggest you google Social Security office and ask what the requirements are. You can find that info on the Internet too. Our county has an Age and Disability office. They have helped my daughter find resources

Google "help for adult daughter who may be on the spectrum."

I know you will have to document the reasons for ssi. I would start with family doctor.

Your daughter may qualify for food stamps and health insurance. Call your county to get information. My granddaughter lives with me and has no income. She receives food stamps and health insurance. I don't know if she's eligible because she's in school.

4 moms found this helpful


answers from Washington DC on

it sounds as if the experts (who are indeed often wrong) have worked hard over the years to figure out what's up with your child, without coming up with anything conclusive. that's difficult and disheartening.

but i don't think that you deciding you've diagnosed her and are now shopping for a doctor who will concur with your diagnosis is any better.

if she HAS been diagnosed as having hearing or sight disabilities, developmental delay, requiring IEPs and institution-level emotional issues, she should qualify for some medical services and aid whether or not you get the coveted Asperger's diagnosis.

here's a good place to start.


4 moms found this helpful


answers from New York on

I imagine your first step would be to have a diagnostic assessment done. You may need to, in conjunction with this step, have her start seeing a psychiatrist on a regular basis (the same one - not just whomever is available on a random basis). Both of these places can issue the necessary reports that get turned in (along with IEPs, medical records, etc.) to Social Security to start the process for either Supplemental Security Income or Social Security Disability Income. Once that has been approved, I suppose that medicare/caid would follow that, along with any other benefits that she may be eligible for such as waivers, PCA hours, or SNAP benefits.

It seems very odd that a child who was institutionalized twice doesn't have a diagnosis (or a correct diagnosis), but I suppose it is possible . . .

I would reach out to your county Adult Mental Health Services department for additional assistance in the process.

3 moms found this helpful


answers from Tampa on

I think you need to look it up in your state. Government assistance I doubt you want to start with attorneys since it’s unnecessary experience that a social worker should be doing.

That’s terrible that drs starting from the pediatrician never picked it up.

I wish you lots of luck! Sorry I was of no help.

2 moms found this helpful
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