Expert: Jene Aviram - 2/26/2010

Question
QUESTION: We have had full custody for 2 yrs with no contact from the bio mom. previously there was neglect and drugs during pregnancy. The bio mom is also illiterate, on my husbands side there is an autistic cousin and an asbergers uncle. What we believed to begin with that the behaviors we were seeing were environmental and would get better in time,they have not, the laundry list is toe walking,can`t remember common food names or that a gas station is a gas station, wants to know what is that persons name is like we should know them personally just because we are in the same parking lot. You can say his name while he looks at you several times but he won`t respond(he has perfect hearing)but when you finally yell it he startles like he had no idea you were talking, he does not show an understanding of other peoples feelings and at times  does not seem to have any himself. he repeats everything while watching TV,  or if you talk to him he repeats back what you say, he sits on the wall and bounces pennies off it for hours, we can be doing a family activity and he acts like we are not there. he can read but has no idea what he is reading at all, he is good at math as long as it`s not story problems, and loves charts and can memorize in like a split second, I made a chore chart and he knew every chore for the whole week after the first read, we are also dealing with behavior issues we have 7 other kids and I have been a parent for 20 yrs the kids are kids so they misbehave of course but this is different he does not seem to understand that his actions have consequences even after 2 yrs of consistency,he lies, steals,destroys toys,hits,kicks,throws things,trips the other kids on purpose. I have tried everything I know how to do and nothing works. He also does not show affection and when he does it is way over the top and really aggressive or seems fake like he does not really feel it but sees it so copies it. he still can`t dress himself,puts his socks on upside down, shirts on backward, can`t button,does not wash himself,pees on the toilet and walls around and behind it, makes a huge mess when he eats, I think his behavior seems Autistic but I wanted an informed opinion before I pursued it,we had him tested in school they said his skill level was average but his IQ was quite low, we have since taken him out to school at home, in school he had an aide that just gave him the answers or all his work came home because he had no idea what to do,I have moved him back a grade but he is still having trouble with simple understanding of concepts so we are moving very slow. I have started to make our days very structured and that has helped some, he hates any kind of change and I have started using charts for just about everything, that seems to actually get a genuine happy response,he loves charts, his doctor though he had ADD and put him on medication but I took him off after a year with doses increasing and no effect. He also stutters. there is another uncle with mental retardation and two other cousins with retardation,he has a biological brother who also lives with the other dad who is slow. any answers would be appreciated or any ideas to help him with some of these things. Thank you so much

ANSWER: Well firstly let me applaud you.  You have 7 other kids and now something new on your hands.  Without any guidance you have come up with devising charts and implementing structure for your 8 year old step son, who is clearly beginning to thrive in this environment.

The second thing I would like to stress is that your step son DOES NOT HAVE MENTAL RETARDATION.  This is clearly obvious in his skills sets, his memory and his responses.

If your step son had come from a healthy environment with a positive upbringing, his case would be easier to diagnose. He does share many autistic traits BUT these type of traits are ALSO commonly seen in children who have had a neglected childhood.  He was probably never taught right from wrong.  Most likely, nobody took the time to show him some basic concepts.  Now that he's already eight, he's expected to build on those early concepts but he doesn't have them yet.  He has spent most of his years fighting for his survival.  I realize that he's been in your house for quite some time but he spent the majority of his life practicing the behaviors he has now... Biting, screaming, kicking etc.  He simply doesn't know how else to express himself and get his needs met.

If I were in your shoes I would definitely get him tested OUTSIDE of the school system.  The school district is responsible to pay for any services he needs and sometimes their opinion is not objective.  The information you've provided definitely warrants an evaluation for being on the autism spectrum disorder.  Let me tell you some of the qualities you mentioned that are red flags for autism.
Toe Walking
Not responding to his name
Not understanding that others have feelings
Appearing not to have feelings himself (which is definitely not the case)
Repeating TV or what you say (called echolalia)
Bouncing off pennies from the wall for hours (peserverative behavior)
Lack of reading comprehension
Good at math except story problems (difficulty with abstract information)
Inappropriate responses to situations
Fantastic memory
Resistance to change

Just to reiterate, many of these can be also seen in children with a neglected background.  I also think it's worth mentioning that children on the autism spectrum LOVE structure and many charts are used in therapy so you are really on the right track.  Of course, if a child comes from an unpredictable home, they respond well too as they feel secure and know what to expect.

I would talk to your pediatrician.  Firstly, your step son absolutely needs therapy to deal with what he has been through.  Your pediatrician can also recommend a good developmental pediatrician, psychologist or neurologist.  These people specialize in childhood disorders and will be able to provide you with an accurate diagnosis.  This will get you the services your step son needs during school as well as at home.

I want to add that many people with autism are extremely smart, but they typically all fail standardized testing.  Many of them show test results with mental retardation but nothing could be further from the truth.  So please don't place much weight on the school testing in terms of his IQ.

Lastly I would like to commend you.  You are doing all the right steps and your actions are admirable and an inspiration.  All your concerns are for this child.  Not once did you mention how difficult it is for you.  But I  know that it is.  I know what you're dealing with is emotionally draining and taxing.  You are a remarkable woman and this boy is so lucky to have you in his life.
Get that evaluation as soon as possible so that both you and your step son will get some help and relief.

I wish you great success.

Jene Aviram
http://www.nlconcepts.com


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

QUESTION: I just wanted to say thank you for the advice and the kind words of encouragement,I needed them. Thank you again !!!!!!

ANSWER: You're very welcome.  You deserve high praise!
Hang in there.

Jene Aviram
http://www.nlconcepts.com

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

QUESTION: Hello again, I hope I`m not bothering you but I took my son to the doctor today and he would not even talk to me about my concerns, he said he does not look like he has Autism (does Autism look a certain way?}, he would not let me explain the things I have noticed at all, it was a very abrupt " your son does not have Autism", I asked how he could tell just by looking at him and he said he could tell ? I have never had him act like this, he has been our pediatrician for 15 yrs and has always been great, why would he just disregard my concern. Is don`t want a Autism diagnosis if he does not have Autism but there is some thing going on and it is not my imagination. What do I do now ?  I want answers for my son and myself, we are making such good progress using the things I have learned about Autism, charts,figuring out what causes episodes, when he needs quiet. I would not have even known loud bothered him so it`s helping regardless but how can find out for sure if my doctor won`t help me ? Thank you again for your input!!!!

Answer
I understand that you've known this doctor for 15  years and that puts you in a difficult situation, but his response is absurd.  Only a comprehensive evaluation can tell you if someone is on the spectrum.  Your pediatrician will not have to live with the consequences of not providing your son with services if he needs help, but you and your son will.

If he's not prepared to assist you, I would not give up.  Find a developmental pediatrician.  Or a child psychologist who specializes in childhood disorders.  Better yet, search on-line for any autism societies/support groups in your area and call them.  They will know who's a good professional to see.

Once again, I am not saying your child will get a diagnosis.  But you are his parent and you are looking for answers.  You have a right to find out.  And your stepson is entitled to services if he needs them.

I'm sorry you have so many obstacles in your course.  But I can see what a determined and proactive person you are.  And I know that you'll find a way.  I wish you all the best.  Your step son could not ask for a better mom!

Jene Aviram
http://www.nlconcepts.com