totally lost

[melij]

I am at a total loss when it comes to my five year old son. Problems started when he was a few months old. Never slept never wanted to be held although breastfeeding went well, he never slept, cried a lot for no apparent reason, said mama at about 8-9 months, nothing else for at least a year after, ate rocks at the park, sand everything that he could get his hands on at home or out. started speaking mostly his own language or always saying ee- then any word ex. ee-mama or ee-boop (elephant) also had wierd high voice, no longer so extreme. at three he was speaking nearly normal. still doesn't understand facial expressions, tone or jokes. first diagnosis three years ADHD, he can sit and wiggle my watch back n forth for five hours. Obsession- snakes or anything long. must touch, even other people, clothes or hair. calls out repeating things he hears on occasion, especially Fu** repeatedly. Has extreme fits, very little eye contact. So questions: Do ALL autistic kids have no or stare through you eye contact? Can he be autistic but still play sometimes? look at people SOMETIMES? Build a train set, but line up other toys? Not be deathly afraid of strangers anymore, but even kiss strangers at the grocery store? Sometimes not hear a word or react, and sometimes have an almost normal conversation? We have had mixed messages. Four pediatricians and one psychologist sure he is autistic, two think aspergers two think high functioning autism pyschologist # 1 says sensory integration defecit, other says autistic, other says not sure, but definately not normal? Among a team at the childrens psych clinic, one says autistic one says different, one says has a lot of autistic symptoms/signs, but made good eye contact so she thinks maybe it's something else......??????????

[Rachel Thompson, Ph.D., BCBA]

I can certainly understand your frustration in finding a diagnosis that professionals can agree upon. At this point, it may be more fruitful to focus on intervention. Although diagnosis can be helpful in securing services, often diagnosis does not provide a prescription for intervention. You identified social skills and social boundaries as one particularly difficult area. The approach to improving his skills in this area would be the same indpendent of his diagnosis. I recommend that you work with your son's school and doctors to identify services to help him to improve in your areas of concern.

[Sally44]

Although you are being confused by alot of different possible diagnosis, all the variations being mentioned are still on the autistic spectrum.
Sometimes professionals can take the clinical diagnositic criteria too black and white.  For example my son can make eye contact.  But if he is trying to think about what he wants to say then no he cannot make eye contact.  
Their ability to function varies day to day and even throughout the day.  
From a sensory point of view they can appear deaf, cover their ears at noise, hear the slightest sound, or start banging on something to make noise.  This means that there is a great fluctuation in his ability to perceive and process auditory information.  All of his senses could be fluctuating in the same way.  When that is happening we cannot imagine how difficult it would be to make sense of anything.
Yes, those on the spectrum can play to some extent at some times.  You might find that alot of their play is re-enacting something they have already seen or heard.  They can also show some imagination, especially in their areas of interest.  They may express emotions and show affection to family members etc.  But they are still autistic.
It tends to become more obvious as they grow up.  A three year old might not behave differently to a family member and a stranger.  You would expect a 5 year old to know that you don't go up to a strange and touch, hug or kiss them.  So although they are showing affection and social interaction it is inappropriate and it is inappropriate because they don't understand social interaction as we do.
If he is eating non-food items that is sensory and is called Pica.
My son has only recently started lining up some toys and he is 7.  He likes to play war games using soldiers.  He doesn't have any obsessions apart from having to watch TV.  He doesn't need routines or rituals although he doesn't like change or changes to his daily timetable or if his expectations are not met.
My son also has a strange tone of voice and although we are in the UK he speaks with an American accent!
If I were you I would read up about autistic spectrum disorders.
As he has alot of sensory issues I would recommend a book called Sensory and Perceptual Differences in Autism and Aspergers by a woman called Olga Bogdashina.  This book has a questionnaire at the back that you can complete to get a sensory profile of your child.  Our autism outreach department uses this questionnaire, so I know it is valid.
I would probably accept the diagnosis to get the therapies and supports in place and then see how your child develops and improves.  There is no way that they will continue with that diagnosis if he can demonstrate abilities that take him off the spectrum.  It is not unusual for a diagnosis to change over time or even to be removed.  My son is diagnosed as being High Functioning Autistic, but his paediatrican has said that if he develops obsessions that his diagnosis might change to Aspergers.
I think things will become much clearer with time.
Autism is not a physical problem that is permanent and inflexible.  It is neurological and therefore he may appear more autistic on some days than others.