Expert: Dr. Sharon A. Mitchell - 10/14/2008

Question
QUESTION: Dear Sharon
I think I have emailed you in the past with respect to my 17 year old son who has just been diagnosed with Austism Spectrum and ADHD.
I have put my own concerns 'on hold' whilst I have been trying to gain a diagnosis for my child, and after having found out so much about Autism Spectrum Disorder during the past 14 years, I am now concerned that I too have an ASD.

I have tried to find an Expert in this field for adults on the web, but there is very little directed towards adults.
I, like my son, did not speak and my Mother had to teach me to make sounds. I made very, very slow development in the early years and my Mother has been of the opinion that something was, and is, missing in my development. She is of the opinion that I am not able to be fully independent and I am still very young for my age. I find things very difficult to deal with.

Sensory issues have always caused me great distress - the vacuum cleaner, traffic, loud noises, people standing too near, I hate being touched or hugged, and lights also cause my system to get over-loaded. I found going to school very difficult because of having to be with people. I prefer to be by myself. I found it hard to make friends. I did not understand humour and jokes and still to this day don't understand when someone is joking with me. I take everything seriously and I also take things literally. I am very clumsy and cannot judge distances very well. I couldn't learn to drive because I found the co-ordination very difficult. It was just like a big puzzle. I have also suffered from depression for a very long time. I am now 47 and I think depression started when I was about 12.

When I have seen psychologists in the past, they state that my depression was possibly caused by my parents breaking up when I was young and being sent to boarding school, but I think my depression has been caused by all my difficulties listed above. I find abstract concepts very difficult to grasp and I find it impossible to read a book. I am a literate person having gained a BAHons in Fine Art, but get very confused when reading. I get completely mixed up. I also find it impossible to concentrate watching television.

Please can you say if you think I might have ASD, and if so, how do I convince a psychologist that it would be a good thing to be assessed. Do I have enough disabilities to warrant having an assessment for and Autism Spectrum Disorder, or could it be something else? Someone mentioned that it could be Schizoid Personality Disorder, but I'm not sure about that.
I have only been to 2 parties in my life. I have always tried to make excuses when invited to such events, because I cannot deal with them. It causes too much distress. It was very hard when I was a student because everyone thought I was odd. I was bullied a lot at school for wearing strange outfits and for seeming very young and not understanding jokes. I tend to wear the same clothes every day until they are dirty, but understand that most women want to wear something different every day. I can't see the point in this.
Please, please can you help me. I have contacted the NAS here in the UK and they are sending me some literature, but they cannot say if I have an ASD or not.

Thank you. I look forward to hearing from you.

Kind regards,
Miranda

ANSWER: I can understand why the NAS told you they cannot say if you have an ASD or not. This is not something that can be diagnosed over the internet.

Reading through your self-description though, it would seem that you may have characteristics similar to people on the autism spectrum. I'm not sure though that you're diagnosis would be Asperger's. I say that because you mention that you did not speak when expected and that your initial development was slow. Because of those two factors, you would be more likely to receive a diagnosis of PDD-NOS or possibly autistic disorder. At this site are the diagnostic criteria for all the diagnoses that fall under the realm of autism spectrum disorders: http://www.agre.org/program/criteria.cfm?do=program

I'm not sure the exact label matters all that much. What does matter is finding the right strategies that help you the most.

Not all psychologists yet are familiar with high functioning autism and Asperger's. What you have written is a good description of how a bright adult with an autism spectrum disorder (ASD) may feel. Perhaps if printed your email and took it along with you to a psychologist that may help.

There are other assessment measures that may lend credence to what you're saying, such as:

http://www.autismresearchcentre.com/tests/aaa_test.asp

http://www.udel.edu/bkirby/asperger/aspergerscaleAttwood.html

http://www.childbrain.com/pddassess.html

http://printables.familyeducation.com/forms-and-charts/skill-builder/51755.html

For some of the above, you may need to think back to how things were for you as a child. If you contact Autism Speaks in the U.K.(http://www.autismspeaks.org.uk/index.html), they may direct you to practicioners who are familiar with assessing adults. Another place to look is http://autism.about.com/od/adultsonthespectrum/Adults_and_Autism.htm

Sometimes the web is a tricky thing and it's hard to find the information you seek. There are actually sites devoted to adults with Asperger's (and their spouses). Here's a few to check out:

http://www.askanaspie.com/

http://aspergeradults.ca/aboutaasn.html

http://www.grasp.org/

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=11

http://www.aspergerfriends.com/AspergersAdults.html

http://www.aspiesforfreedom.com/

http://www.aspergersworld.com/forum/topic/listForCategory?categoryId=1454106%3AC

http://www.aspires-relationships.com/

http://www.autistics.org/


Below are sites specific to Great Britain:

http://www.aspergerfoundation.org.uk/info_adults.htm

http://www.waasp.org/

http://www.priorygroup.com/pg.asp?p=adultas


Here are a couple sites where adults investigate if they might have Aspergers's:

http://www.eas.asu.edu/~autism/DoIHaveAspergers.doc

http://women.timesonline.co.uk/tol/life_and_style/women/body_and_soul/article341

http://autism.about.com/od/newlydiagnosedadults/Adults_Newly_Diagnosed_with_an_A


Then there are some adults who were not diagnosed until adulthood who share their thoughts online and in books:

http://www.aspie.com/

http://www.jerrynewport.com/

http://www.nlconcepts.com/autism-shore.htm

http://aspennj.org/pdf/information/adult-issues/different-for-decades.pdf

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=8

http://www.autismspeaks.org/community/ownwords/intheirownwords_aspergers.php

http://www.mugsy.org/gunilla.htm

http://www.donnawilliams.net/articles.0.html

http://www.robynsteward.com/

That should provide you with enough reading for a while.

Reading through some of the above links, you may feel a sense of community reading about how adults with ASD's describe their lives and the strategies that work for them.

I prefer to read books and sites that are not doom and gloom, that see the positive side of their characteristics and strive to make themselves strong. As such, the following is one of my favourite sites, written by a fellow diagnosed as an adult and proud of the way he is.

http://isnt.autistics.org/

Sharon A. Mitchell, B.A., B.Ed., M.A., Ph.D. candidate
www.autismsite.ca






---------- FOLLOW-UP ----------

QUESTION: Dear Sharon
thank you so much for sending me all of the very useful links. That was very kind and helpful of you to go to so much trouble.
Very many thanks,
Miranda

Answer
You're welcome Miranda and I hope you find what you're looking for. If you do in fact have Asperger's like your child, you're already way ahead of the game. You know lots about AS and in a great position to help your son. You'll know it from the inside out - how it feels, which stategies have been most useful to you, etc.

A couple books you and your son might enjoy reading are:

- Freaks, Geeks and Asperger Syndrome by Luke Jackson

- Your Life is Not a Label by Jerry Newport

Both these authors have Asperger's and write about what works for them.

Best of luck to you both,

Sharon A. Mitchell