Help me help my son, please!?

Question

My son is now 17 and has been in special education his entire life since the age of 2. Problem is, even after all the testing that has been done, he's never been diagnosed with anything! If they could just tell me, "it's autism"....or "it's aspergers", it would be such a relief! Any suggestions? We live in Virginia...I'm not sure who to turn to to get answers. He has no friends, and he doesn't drive yet..don't know if he'll ever, partly because we don't know what the problem is.

Thanks for your many responses. I'd love to share a few more details. First of all though, to the "where have you been" question...I'm offended!!!! The reason he was in special ed at such a young age..."2" is because I was fighting to get answers! He's had blood tests, MRI's, CAT scans, EEG's, and an IEP from age 4 1/2 through the school system. He's had the testing every three years, and he's been to a psychologist of my choosing outside of the school system who said he doesn't have Aspergers...even though I thought he shows many of the characteristics. He was labeled as "mildly mentally disabled" through the school system. He's received speech therapy, occupational therapy, and I was told that he has some sensory integration disorder, and semantic pragmatic speech problems. So please, don't ask "where I've been"....I've been fighting tooth and nail for my son, but the problem is, I've never been given a definitive diagnoses, like "Autism".

I appreciate the suggestion to check with the local Autism Group...I found one through River Road Methodist Church, and I'm looking into it. For further details on Jonathan...he has definite speech problems, he's not always on taks...he doesn't understand sarcasm, he tends to ramble on when he talks, he is somewhat clumsy, and seems to have some musculoskeletal involvements because he has a poor posture and keeps his head to the side most of the time. He's sweet, honest, funny, loves sports and video games. He doesn't seem to have the mental ability to drive....at least not now. He desperately wants a girlfriend, but I don't see how that would ever happen. He also has no friends. He seems to want friends, but yet he likes to be alone a lot, and sometimes gets moody when his alone time is interrupted. If you met him, you could definitely tell that something isn't right, but it's very mild. I guess with his adulthood fast approaching, I'm looking for more ways to help him.

Answer 1

He's been diagnosed with something because he's been served as a special education student. Asperger's is reserved for students with a higher IQ. Is your son capable of going to college? If not, he's likely only been labeled as having autism. Look back at the records that the school has given you at re-evaluation meetings (required every 3 years). If you feel that you haven't been receiving all of the paperwork. Show up at your child's school and ask to see his records...it's your right. If you would like a re-evaluation...put it in writing and give a copy to your child's principal and your child's case manager. The school has to do it... last version of IDEA gives you this right. If you receive no help call or better yet, show up at the office of the special ed. director for the county.

Being that your son is 17 and is almost eligible for adult services, I'd also give your county's Vocational Rehabilitation for evaluation services, etc. VR as it is commonly referred to will take over the school's role at the age of 21/22 when he exits high school.

I would think that contacting the local parent support group for autism would be very helpful. Seek all the parent education materials they can give you.

Answer 2

Has his testing been primarily through schools or have you seen a private specialist? The trouble is that schools in general do not have medical degrees and cannot provide a diagnosis. I would contact the local autism society and ask them if they could suggest a good psychologist who screens older children.
I would also look at the school because even without a dx, they should be able to help with all of his needs, be they academic or social or vocational. They should be teaching him how to drive, how to make friends, how to follow life skills.

Good luck and God bless.

Answer 3

You should have spoken up sooner - they are passing him "out of the system". It is a common practice since testing is expensive - he could be dyslexic (it does effect more than reading skills) or have any number of limitations that frustrate him and make school a torture. You need to make an appointment with the Special education director and demand that all tests be done ASAP. If he is 18 before the tests are complete the total cost is on you (approx 15,000). Schools have resources that reduce these costs considerably and they are presuming you don't care because you don't know your rights as a parent. Read the handbook, petition for complete testing and fight for your child's future. Good Luck!

Answer 4

Virginia has 14 disability codes (learning disability, mental retardation, multiple disabilities, et cetera). Under which category is he being served? This is a place to start. There are two types of diagnoses: medical and educational. Autism and Asperger's are medical diagnoses that his physician (pediatrician, psychiatrist, maybe psychologist to which he is referred) would diagnose. It is your physician, not the school that would give this label. The school will merely recognize the diagnosis and confirm that the disability adversely impacts his education. There are also educational diagnoses, such as learning disabilities, that the school system will make. This is where to start.

It is possible that your son does not have one diagnosis that explains everything. He could have a learning disability and social anxiety, for example. Sometimes it is hard to pinpoint, but you can get a general idea.

Could you update your question? I'd like to give you more answers, but I need more information. Under which category is he served? Where does he spend most of his educational day: general or special education settings? What is his level of functioning? And anything else.

Answer 5

You ought to see a clinical psychologist to get a full diagnosis. Many professionals tell you that they don't like to label children but if a child has a condition surely you have a right to know what condition you are dealing with. I have a daughter who has Asperger's and several other conditions. The psychologist she saw said she had an ASD but would not specify. I took her for a second opinion as I needed to know what strategies to use with her and without knowing her condition how could I help her? She has not changed since her diagnosis but it does make things a little easier for me to know exactly what I am dealing with and move forward from it. If I were you I would push for a thorough diagnosis. Good luck and happy new year.

Answer 6

I know a boy like your son. Same age and everybody labels him "weird". He's being home schooled but still participates in activities that other teenagers do even though you see him by himself. If he's not concern don't you be. Try to get him involved with productive activities not lame ones like go to a party find an girl and get drunk. Believe me, he has more sense than that!

Answer 7

go to your family doctor and see if he knows anyone who gives mental tests.my daughter was in special ed most of her life. they said, don't be surprised if she doesn't go far in life. she'll probably never drive, hold a job get married otr live a normal life. all i've got to say is she's happily married to a real smart guy, she's been driving for 2 years and had the same job, in a hospital for 4 years. be careful who you get him tested by.

Answer 8

A diagnose doesn't always give a relieve or opens your eyes.Many diagnoses are dynamic as the human mind, so just having the "word" doesn't provide the clear picture.What I do with my special needs kids is that I write their skills and abilities down and work on them to expand what they already have.

Wishing you all the best!

Answer 9

I would take him to a neurologist who can diagnose
Autism or Aspergers etc. I would also take him to have a neuropsych exam. The schools can not diagnos anything and you need a specialist. Have you ever been to a developmental pediatrician. All these people can help. Alot of the testing for the ASD spectrum is observation so it would be stressful testing. Good luck

Answer 10

Unfortunately problems like this are severely underdiagnosed. I am bipolar, had it 50 years before it was diagnosed. Try lithium for a month and see if it helps, or try anything.