looking for a diagnosis

I have a now 18 yr old son and my family and I are convinced he has a mild form of autism. Seems closest to Aspergers. We have been to dr.s for yrs as most of these symptoms seemed to become more severe around middle school age. All he has been diagnosed with is social anxiety. I know in my heart that is just a symptom and it's not the root. At 18 what is the best way for a diagnosis?

I need to find screening for adults in the southeastern Massachusetts area.

Hi WendyLee, and welcome to IAN.

It is actually quite common for someone with very mild ASD to go undiagnosed for a very long time. (I received a note today from a 63 year old who believes she has Asperger's and was never diagnosed.)

If your family would like to explore whether your son actually has Asperger's (as opposed to just social anxiety), you will need to find a local professional who is expert in recognizing mild ASD in adults. There are several ways to find such a person, including asking any physicians or mental health professionals you are working with now if they know of someone like this. You may also want to ask the autism advocacy organizations about local resources.

Autism Speaks' Autism Response Team: 888-288-4762

Your local Autism Society of America chapter: http://www.autism-society.org/site/PageServer?pagename=community_chapters

Another possibility is the Global and Regional Asperger Syndrome Partnership (GRASP): www.grasp.org

(They have some "diagnostic sources" listed, as well as other resources for adults with Asperger's.)

You may be interested in our article, by Simon Baron-Cohen and colleagues at Cambridge University, on a "very late diagnosis" of Asperger's: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome

Keep in mind that people with Asperger's are not just "geeky" or socially awkward, but are literally impaired in reading and understanding the social world. They have impaired "theory of mind," that is, they have a very hard time figuring out what other people are thinking, or intend.

Best of luck to you. I hope you are able to find a helpful professional and that, whatever the outcome, you receive some ideas about how to help your son feel and function better.

Thank you so much for your response. It gives us a direction. This has been very frustrating for us as we have seen symptoms, researched them and feel that no one is listening. We are in the process of trying to find the right Dr. and looking for someone to see what we see.
again...thank you!

According to my mother, I did not walk or talk until the age of 3 yrs old. Any changes in my environment or the home upset me. Used to cling to my mother and brother. She was aware there was something wrong with me so she had me evaluated at around the age of 3 yrs old (1973). Back then, the specialists placed blame on the mother. They even told her I would be mentally retarded. I was sent to a specially school from 1974 - 1975. Somehow, I snapped out of my late blooming issues. Actually, I believed I was scared out of my emotional sensitivities, because the school was nothing shorter than abusive to the children in its care.

When, I was ready to return to regular education, fear drove me to succeed. After attending Pre-K, Special School, 1st grade, twice, by the 6th grade, I made to the highest level classes and made straight A's. It was probably never lack of intelligence, my IQ is in the average range, it was PPD NOS or Autism or Asperger's that caused the emotional over sensitivity. Regarding the fear of failure, creating enormous pressure to succeed, the fear of having to be sent back to that Special School was enough to make anyone want to excel to avoid that hell.

By Junior of High School, the need to be extremely successful caught up with me because from 5 yrs to 18 yrs, I never discussed the emotional stress it was causing me to be the perfect student and daughter. Finally, with counseling, I was given the opportunity to share my story without fear.

I have attended College and became a nurse. I am happily married. I continue to have anxiety and a high energy level that amazes most people. I worry about many things quite often. I converse with people, but I am not able to have them close to me. I don't want this taken the wrong way, but I virtually trust know one. This does not mean that I do not care about people, they just cannot get close to me.

I have to ability to remember dates, numbers, phone numbers, past experiences of my classmates, and details of events. It can be overwhelming at times.

Sometimes, I wish for a formal diagnosis, but what would I do with it? I am currently on an antidepressant and that keeps me somewhat level headed. I often have GI upsets. At times, sleeping can be a problem. I am medication sensitive, so trying a new medication for improved symptom management is a major hurdle that I am unwilling to jump at this time. Recently, I have wondered if ADHD, with emphasis on the HD could be a diagnosis because I multi-task, talk fast, and I unable to stay still for very long. The work gets done, but I am usually stressed about it.

I have tried to obtain information on the Special School that I attended several times, but no one seems to remember. I wish I could forget.

I consider myself very fortunate to be high functioning, considering the anxiety and how my mind processes information. I do not have children. Sometimes, I wish I could have had a child but at least I do not have to worry about passing on any of my issues to a child. Life has been challenging and sometimes I really wish I had answers to why I act and think the way I do.

Hi TS. I have heard from many adults who believe they have ASD that they have decided not to spend the time and money necessary to get a diagnosis. They say that they can see little benefit.

Others do seek a diagnosis for a number of reasons. Some are seeking self-understanding, or to be able to explain to others any past difficulties. Some are hoping to receive benefits or protections as a person with a disability. Some want to participate in research, but can't without a formal diagnosis.

In any case, it seems there must be a whole generation of people out there with undiagnosed, higher functioning ASD. See our article about Very Late Diagnosis of Asperger Syndrome, here: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome