Expert: Catherine Ridenour - 7/7/2008

Question
QUESTION: Hi Catherine

I would be extremely grateful if you are able to advise me in respect of my 17 year old son Jonah. He has previously been assessed twice with child paediatricians, but neither has been able to give a definitive diagnosis. Great Ormond Street said that Jonah does present with social and communication difficulties but they did not meet criteria for a significant disorder on the autistic spectrum. The previous paediatrician said that Jonah was merely struggling at school and needed to be Statemented. Now we have visited a 3rd Diagnostician who consider that Jonah has difficulties with receptive language, difficulties paying attention and concentrating and poorly developed social skills for someone of his age. They stated that he came across as much younger than his age.

In the tests carried out, he displayed difficulty understanding the intentions of others in relation to language and social interaction, problems with theory of mind and with particular uses of language.
They stated that his understanding of jokes, white lies and idioms were poor. Jonah was not aware whether someone who was being sarcastic was lying or telling the truth. He was not aware of persuasion nor of characters having contrary emotions. His grasp of the difference between appearance and reality was not always clear. Jonah did not understand that a character from one of the stories had forgotten something.
As well as these listed difficulties my son also has never been able to concentrate or pay attention. Messages do not get through to him. Peers found him to be odd. He did not have any friends from secondary school onwards. Jonah has never liked a change of routine. He is obsessed with skateboarding. This is all he will do. If people are talking in conversation, Jonah cannot follow and will often change the topic around to skating.
As a younger boy, he displayed a lot of echolalia. He was never able to take other people's feelings into account. He still cannot understand that others may feel differently from himself. All of Jonah's teachers suspected that Jonah had some deafness, but this has been tested many times and has been found to be 100%. Jonah takes things literally. I explained that I was going to take part in the Open Studios event here (where artists open their studios to the public) in September. And Jonah said "Does that mean that you're going to leave the door open?" He could not work out why a local property had been boarded up, even though in our area there is a lot of property re-development. He has never had a sense of danger.
I am of the opinion that the Consultants are going to go along the route of diagnosing ADHD although I am of the opinion that Jonah has both Autism and ADHD. He has been so very badly let down. I had to remove him from secondary school twice because of the most awful bullying. I could not sit back and allow Jonah to be treated so appallingly. Please can you help me. I need to know if you think Jonah has Autism as well as ADHD? Jonah said that if he does have ADHD he is not going to take medication. He is not keen to apply for a job because he wants to be a pro skateboarder.
I want my son to have the right diagnosis. Whenever I raised the possibility of both ADHD and Autism before, the professionals said no to both of these conditions.
Thank you very much.
Kind regards,
Miranda (March)

ANSWER: Hello Miranda,

Your son is displaying all the classic symptoms of Asperger's syndrome. This is considered a high-functioning autistic spectrum disorder. Poor attention is part of the syndrome.

It IS possible to have both ADD and Asperger's. If you can't get them to deal with both, go for the Asperger's diagnosis.

The receptive language issues are the most critical piece of this puzzle. He has to be taught that words have different meaning in different contexts. He can learn this but only like we learn lists of unrelated facts. Likewise, direct teaching of social skills works, but every new situation requires new learning. As these kids get older, they build a larger repertoire of social behaviors to draw from. But, they never deal with new situations in the instinctive way you and I do.

At this point in his life, school is nearly finished. If his passion is skateboarding, support him in becoming the best he can be. If, in fact, he is not very good, suggest he learn about building or repairing skate boards. Try to help him find work in a skateboard shop in the back room doing hands on work, not out front doing customer service.

Some of the terms you used lead me to believe you live outside the United States. I am unfamiliar with them. Do find out what his legal rights are to an appropriate education. DO get a diagnosis BEFORE he is a legal adult so that he is entitled to whatever social and financial support services your country offers. At least in the U.S., that is the best tactic.

You did not mention if they attempted to determine his I.Q. You probably have a better idea of his intellectual ability than the test will show. Impaired language knocks a big chunk off of the score for most kids. If he's as smart as most A.S. people, he will find his way with your support.

Best wishes,
Catherine

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

QUESTION: Dear Catherine
Thank you very much for replying so quickly. Your reply is much appreciated and very helpful. Yes, we live in the UK and I am sorry that some of the terms I used were probably terms we use in this country.
Jonah's IQ has been tested previously and was found to be very low. He struggles with intellectual/academic work partly due to not understanding the language as well as not being able to pay attention.
I get the feeling that the National Health Specialist we saw recently is going to diagnose ADHD as they did vaguely mention Ritalin. I think they feel that his inattention is causing all the other problems in language and behaviour. However in my opinion Jonah has ADD as well as Autism/Aspergers. He was not hyperactive when young, but messages did not get through to his brain and he was not able to understand what he was being asked to do. He was not able to concentrate either. He was not speaking until he was 4, and then the speech came very very gradually.
Yes, it is important for Jonah to be diagnosed before he is 18 in order to qualify for social and financial support. I am trying to push for a diagnosis. Jonah has his follow up appointment on 28th July when we will learn the outcome of his assessments. I would like to be able to let you know the outcome when we know as you have been so kind and helpful.
Thank you very much. Very best wishes to you,
Miranda

ANSWER: Hi again,

If you believe he has ADD, I would encourage a trial of medication. My daughter benefited, greatly.

Good luck,
Catherine

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

QUESTION: Hello Catherine,

just a very quick note to say very many thanks for replying to my concerns so quickly. It has been most helpful.

The only difficulty I have is not knowing whether the Aspergers Syndrome is causing the inattention, or whether the poor attention problems are causing all the symptoms normally associated with someone with Aspergers? It is very confusing but if you think that Jonah has Aspergers, I will press them for that. The difficulty I also have is that my son has told me that he does not want to take medication to help. We seem to be in a no win situation. It is terribly difficult. I would like to be able to let you know the outcome when my son has seen the paediatrician on 28th July if this is possible please.

Thank you very much for your support.
Best wishes,
Miranda

Answer
At his age, there is no medication I would recommend for the Asperger's. Risperdol is being recommended for autism but the side effect profile is terrible. I would not give it to my child.

If he does prove to have ADD, tell him that trying medication does not mean he has to take it if he does not like it. The good thing about Adderall and other ADD medications is that if they are going to work, he will know immediately. They can start at a low dose and try moving up a little at a time.

He may find he likes being able to attend to what is being said to him because no one has to repeat themselves or push him to complete a task he did not realize he was given. Life would be less of a hassle.

There are few, if any, side effects. He will not feel sedated or "rummy." Starting low and working up avoids the jitters that can happen with higher doses.