Expert: Paul Johnson - 5/24/2009

Question
My adopted daughter was a quiet baby who never babbled.  Nonetheless, she did manage a word at just past a year old.  I had her "evaluated," by the professionals who pronounced her development to be normal, and brushed my fears aside.  I have many things to point to that show that her development was anything but normal. She received the label ADHD at school but her problems were much more severe:  INTENSE anxiety, inability to learn, not able to decode social input, struggling to fit in, inability to put things in order or pick up logical flow and her executive function while better than it was, is still very weak--things need to be kept simple for her to function.  She has an incredibly difficult time with audio input.  She can function on a superficial level but entirely misses most abstract concepts.  In some ways she is perfectly normal, in other ways she is severely handicapped.  She presents with a mixed bag of symptoms.  Finally, after dropping out of high school, which was an absolute nightmare for us, she is able to have a part-time job as a waitress (there were MANY failed attempts at jobs).  I am scared to put her behind the wheel of a car because while I have seen her drive competently, she is not good at deciphering the consequences that might arise from a given course of action.  There persists a huge gaping hole in her cognitive processes which worries me.  She is 19 years old and would be called very immature for her age.  I have found a clinical psychologist of many years experience who has met with my daughter and is the first person who has brought up the possibility of autism spectrum disorder.

I have two questions for you, that you might be uniquely qualified to answer:  

1) Where do I get good, solid information about how to parent a late diagnosis PDD NOS child?  I was thinking of online school to finish high school.  Even my daughter acknowledges that she needs a high school diploma.

2)  How do I bring her to the point of acknowledgement about her diagnosis. Do you have any suggestions for me?  This is a rather open ended question, but I am desperate and determined to help my daughter--at the bottom of it all I still see this intensely anxious little girl trying to fit in.  Considering her disabilities, she has coped magnificently with the hand that was dealt to her, in my opinion.  

Also, will a neural-psych evaluation confirm this diagnosis?
I am thinking of applying for disability for her based on the outcome of the evaluation.  She needs medical coverage and maybe some support services.  WIth proper support, she will be able to hold a job and she might find her way into a couple of areas that she would excel in--while she has disabilities, she also has strengths and the IQ test results point to normal range.  

Fiercely Determined Mother in OH

Answer
Dear Melissa,

Thank you for your excellent question as it is specific and full of important details regarding the functioning of your daughter. I will begin with her intellegence, as I was wondering about her level of intellect until your last line. If her intelligence is within normal or average limits, she can understand what she would need to adjust in order to fit in and succeed in society.

The most important education is that which petains to self. With this in mind she will need to understand her differences. I refuse to say that she is dis-abled but is abled differently from the general population. With my 14 year old Aspie son I use the phrase "people who think like us" This will allow your 19 year old to realize that her thinking is not always understood and appreciated. However it also empowers her to know that she does have a challenge in that it is her responsibility to assist others to appreciate her thoughts and actions. If she knew she is capable of helping others to permit her to fit into society, this would lesson her anxiety and perhaps lead to a more satisfying employment connection.

I do not think she has PDD as this is a catch all phrase when the clinician believes the client is likely on the Autism Spectrum but does not know how to make a specification. Asperger's is a more realistic diagnosis. Share with her the strengths and talents of Asperger's. Also share with her the famous people that are likely to have an ASD. The internet has many sites that list famous people with ASD traits.

I do not see you as parenting her as much as I see you as a guide for her self discovery. She is more likely to resist anybody's label of her so keep things descriptive and share what advantages it is to think like an Aspie.

Lastly I agree that an Neuro-Psychological examination and assessment is an excellent place to start with a competent assessment of an ASD.