I believe my 19 year old has aspergers. I have spoken to the schools through out her years in elementary, middle and high school. Because she did well in school, everyone assured me that she was just "painfully" shy. Now that she is older, it is so apparent that this is what she has. My heart is breaking because I feel like such a failure as a parent. How could I have not known this? Where do I take her to get her officially diagnosed? How do I handle her? What will they do for her? I don't feel like I can handle her anymore and I don't know what to do with her.
EDITED-------I didn't include all her symtoms before, I just didn't want it to be too lengthy. But she displays ALL the symtoms. She won't look you in the eye when she talks to you. She walks slightly on her toes. She has a monotone voice. You can't reason with her. She is very smart with school work, but has no common sense. No social skills. On and on.............. All these years going to her school and Doctor, I didn't know what they should be looking for. I just knew there was something not right. I had never heard of aspergers until recently, and while I was trying to research what could be wrong with her, I came upon an apergers site. She had all the symtoms and that is why I am 99.9% sure that is what she has. I just wanted some help on where to go. When I thought she might have this, I had mentioned it to our family Dr and he didn't think she had it. She did well in school so he said she was just shy. After going back and forth with the Dr and the schools, I just figured she was shy and immature, just like they said. But she had gotten worse and thats when I started looking online to try and figure out what was wrong with her. I have had no help from the Dr or the schools. I found this site upon searching for more information about aspergers. I thought this would be a good place to start, with others who have been through and are going through this with their children.
Little Friends in Naperville has several services/programs that can serve her, including diagnosis, social skills groups, etc. (I don't work for them and not affiliated, just aware of their programs).
I know what you are feeling. It is difficult, especially with a girl, their presentation is not quite as recogizable as it is for boys, and some slip through. Don't feel guilty.
Contact a psychiatrist and get a neurpsychological evaluation to back up the medical diagnosis. You may need to use this information to obtain gaurdianship of your daughter, and you she can also be elegible for social security payments to help you care for her, if she is not employable. The new insurance law will now benefit you, she is elegible to be covered by your insurance until she is 26. Many colleges have programs for kids with these kinds of issues, you could start with your local community colleges disablity services.
Don't look back, look forward. There are still many services that will benefit her, social skills groups and classes, and cognative behavioral therapy will still be effective for her. Contact NAMI and take their cousre for caregivers, you may need support and help yourself because it is a difficult road.
Tony Atwood is the Asperger guru, start reading his books for good strategies and ideas.
M.
Start with her doctor. They might be able to point you in the right direction. Good luck. You're not a failure! People are so much more aware of Asperger's now. Don't beat yourself up.
http://www.aspergersyndrome.org/
This is a great resource that will help you find help where you live. My three year old is diagnosed, but it is only because I grew up with a close family whose daughter was on the spectrum that I recognized something wasn't quite right. I agree with others, 19 years ago you wouldn't have received a diagnosis. Even today some people think I'm nuts because they think girls aren't on the spectrum. I have a close friend who just went through getting her 19 year old son diagnosed so that he would qualify for the help he so needed. Hang in there. You are doing the right thing. It is going to take some time, but you will find a vast network of support out there.
Aspergers is not easy to diagnose, don't beat yourself up over it. There are many successful people out there who have aspergers. I would contact a neuropsychologist and have her tested and they will steer you in the right direction. If she's 19 and was never diagnosed, I don't think you will need to obtain guardianship. With some help, she should be able to live on her own and care for herself.
Wish I had numbers on me. Do not fret. We all wish things that we could have done. Move forward. Call, look up, whatever. SASED, NAMI, NESDRA. There are probably websites for aspergers. That is something I wouldn't have known about so don't feel bad. I just learned about that particular condition in the last couple of years and work with a few people with it. You are entering into a wonderful new world.
Asperger's in girls can be so hard to diagnose. Also, it wasn't even an official diagnosis until 1994, so even if you HAD gotten her diagnosed when she was young, she very likely would not have been diagnosed. I'm sure it wasn't until close to 2000 when psychologists were diagnosing it somewhat reliably.
You didn't mention what her issues are, other than being painfully shy. If that is her only issue, then you won't have too much to work on. Ironically, my daughter with Asperger's is anything BUT shy! It really presents so differently in each child.
You've already gotten some great info on how to pursue a diagnosis. Good luck!
My advice is go with your gut. You know your daughter better than the doctors. My son has Aspergers idetified when he was 7. I knew something was different about him since he was 6 months, no eye contact as he got older, no hello or goodbyes and of course many more things. I flat out asked my ped. when he was 18 months if he was autisic and she soid , "oh don't worry wait until he's two if he's not talking then we should look into it. Well I switched doctors. It wasn't until 3 year old pre-school that I knew something was different, he didn't participate with the class, just over in a corner by himself doing what they did. Anyhow, it was a friend that told me abou the Early Intervention Program for kids. They will evaluate your child, a psychologist, social worker, speech, occupational, physical therapist and then they let me know what they thought. All children are entitled to this service. You must look on line for an office near you or in your school district. The state pays for these services. Once your child has been diagnosed, it may just be delays, you will get an Independent Plan of action for your child. It changed my life. In just a month I saw huge improvements. You are not alone in this. It is not a devestating diagnosis. I embrace all the uniqueness of my son, he is brilliant and beautiful. His Aspergers has nothing to do with me, nor does your daughts with you. Please just get her the right help for her and for yourself. There are support groups and lots of information out there for you. These Aspergers children are amazing, a blessing you will come to find out. It is challenging and frustrating at times but aren't all people?!! I hope you get the help you need. Good luck.
Wow - I am curious as to what school district just sent her through without having her tested and evaluated. My 22 yr.old son has aspergers - he was diagnosed at age 10. He had an IEP in school from 1st grade on through high school - but until 4th grade, we didn't know what he had.
We didn't have to have him "officially tested" to receive school services so I don't have that answer- but I would love to talk to you or meet for coffee to see if I could offer some support - just don't know where you are located.
I am in NW Chicago suburbs
Please feel free to send me a message so we can talk more. I just went to an awesome presentation last week at Harper Community college about supporting your child in post secondary education when they are on the autism spectrum - great presentation by a professor from a college in CT.
M. H.
How is she at home with you? I have a "painfully shy" child, but at home, she talks, laughs, and makes eye contact just fine. If she is not "normal" at home, then I would have an evaluation.
i dont have any experience wit this but it seems to me that she doesnt need to be "diagnosed" . I would look for a support group to find some ways to help her and maybe some professionals that can help assist her with working through some of her differences.
