Expert: Paul Johnson - 5/13/2008

Question
QUESTION: Hello, I am living in the UK with my son Jonah who is now 17 years old. Jonah has seen several paediatricians but has not been successfully diagnosed with anything to date. I am more or less certain that he is autistic. Jonah was not speaking until 4 yrs and needed a lot of therapy. Speech came very gradually. Messages did not reach my son's brain and he did not make connections or understand what people were trying to communicate or say. He has never had empathy. He takes things very literally. He has poor receptive language and has never been able to concentrate or listen to other people. My family has thought for some time that Jonah needed Ritalin, but this has not been prescribed to date. He is completely obsessive with skateboarding. This is ALL he wants to do. He is struggling at college and does not really want to be there. He has strange eating habits. He finds swallowing some foods very difficult - this has always been in evidence. My son suffered at the hands of bullies for many of his secondary school years before I took him out of the abusive situation to educate at home. He could not relate to his peers. He acts out in certain social situations. I am really at my wits end and don't know where to turn. The future seems very bleak for my son and I have almost ended up with a nervous breakdown in the process of trying to gain a diagnosis for my son. Thanks very much. Miranda

ANSWER: Hey Miranda,

Thanks for your important question. It appears the salient question here revolves around what you are waiting for. If you feel he is on the Autistic Spectrum of Disorders then it would be encumbant upon you to act as if the disorder is real. You live with your son and observe his behaviors on a daily basis. Why drive your self crazy if you have done the research and it is clear to you that he is Autistic.

An Aperger's Syndrome diagnosis is tricky at best and often takes many years for trained clinicians to accurately respond to. Virtually every member of my Adults with Asperger's group has been diagnosed After turning adult.

It is time to turn towards advocacy and seek out all of the services and accomodations there are aviliable for those who are on the ASD.
Eventully somebody will be able to make a formal diagnosis while he is receiving services and treating his struggles. Do not wait for a
diagnosis to act on something that is clear to you. The diagnosis might be another 20 years in coming. Act as if and have him treated to the best of your ability now that he is about to exit the school environment.

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

QUESTION: Dear Paul
thank you very much for your quick reply in respect of the concerns I have in my son Jonah. I do think that Jonah is on the Autistic Spectrum, but I am only Jonah's mother and not a specialist in ASD and am not able to give the diagnosis which my son needs. In order to gain help and understanding in terms of gaining and retaining a job and if Jonah needs to make a Disability claim, I believe it is necessary to have a professional diagnosis. Great Ormond St Hospital were only able to say that Jonah does have a complex case and has difficulties in the social and communication domain and satisfies the restricted interests domain, but does not present with sufficient difficulties for a significant disorder on the spectrum. It has been so difficult trying to get the professionals to see that my son has the difficulties he has, because they were influenced by what Jonah's last school said about me. They criticized my parenting skills and said I was eccentric because they wanted to shift responsibility. I am a very kind person who wants the best for my son and want his difficulties to be acknowledged. As a normal parent I tried to gain the right help but my personality has been attacked in doing so. This doesn't make sense to me and is very unkind. The school's comments made the professionals say that we needed family therapy, when we don't. I have been the only person to try to get help that my son needed but in so doing have been condemned.
My mother was extremely concerned about Jonah's lack of development when very young, and I tried to act upon this by seeking assessments of my son. However no-one could diagnose anything and every person we saw thought that I was making too much of a fuss.
Jonah was neglected and bullied by the school (both teachers and pupils) very severely and it has since transpired that he should have been statemented from the very first class at school. However, school said that I was making too much fuss. Because school neglected my son, I certainly could not sit by and watch that happen. It would have been inherently cruel. I do hope that the diagnosis will not be another 20 years in coming becuase I feel pushed to my coping limits as it is.
My son's life has been in danger on some occasions because he does not know how to act appropriately in a social situation. Adults have threatened to hit him and recently someone said they would slit his throat.
He is rude to me continually because he does not have the social niceties and does not know HOW to communicate, taking other people's feelings into account.
Messages have never reached his brain. When he was little I was most concerned as to just how much he understood.
Jonah is currently being seen by a diagnostic Paediatrician who I believe has a good reputation, so I am hoping they will be able to come to some kind of conclusion.
During the initial assessment, they did state that Jonah has receptive language difficulties, very poor listening skills and lacking the ability to pay attention and concentrate also that he seemed very much younger than his 17 years.
Jonah is going to have a music assessment next week, also a more intense language and speech assessment, so I am hoping these will produce results. I am especially stressed because Jonah's father is very poorly. He has already had 2 heart attacks and triple by-pass heart surgery. I am finding everything extremely hard to deal with. I will let you know the outcome of Jonah's assessment on Monday. Thank you for allowing me to express my concerns. This is very helpful. Kind regards, Miranda

Answer
Hey Miranda,

You have my utmost respect for handling this stressful situation. The clinicians are on the right tract when they have pointed out his delyas in eceptive langauage skills. I think this is the key aspect to understanding his diagnosis. he does not understnd what is being said to him and thus his social skills suffer. Now the key point is to uncover why his delays are so deep for him. I think if you were able to find out what is behind his delays you will know why he acts the way he does. It sounds like it still might be the Autism spectrum that you are working with here. Let me know about the results of the latest assessment.