Awaiting Diagnosis for...???

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I am the mother of a 6 year old boy. We have been battling with pedatricians and child psycologists for 2 years for a diagnosis for him.
At first we were all convinced he had aspergers (doctors included). He has many of the traits. Hes obsessed with a piticular topic for anywhere from 2 months to over a year with the latest one - to the point where it takes over his entire life. At the moment it's Ipads. He lives his entire life like it's an app and does everything on levels and earns points for everything etc. We need to "push a button (usually on his chest or tummy) to get him to do most activities or we have to choose which level he does (ie: should he have a quick rinse which is 2 minutes, a good scrub which is 5 minutes etc (the sims) when he has a shower! or choose a level for a more difficult activity). Numbers also seem to rule his world. He is a loner at school and keeps to himself. If I have another child over (to attemp to get him to play with them) he does his own thing and I end up being the one to entertain the other child. He never played with toys, only lined up blocks etc. He's done "strange things" all his life. Had obsessions with plug holes and ceiling fans or had to have something put in a certain place for months on end.
There are so many things that pointed to aspergers that it wasn't even a question. However.... He was tested and it came back negative. The psycologist said he showed too many "social cues" and didn't tick enough boxes to get a diagnosis of ASD. They are toying with the idea of ADD (also shows some very strong signs of this alot).
He is VERY bright and was doing a 10 year olds maths after being at school for 6 months and also reads well above his age. he spoke fluently at a very youn age. His motor skills are below average.
The psycologist is saying he is gifted and thinks on a different wavelength to everyone else and this could be whats causing his behaviour and "quirks".
I am not convinced and it seams that my son has been put in the "to hard basket" and we are being fobbed off. I feel that he is on the spectrum. Is it worth persuing (ie: can he be re-tested and it come back with a different diagnosis? or will it always be the same?) Or is there possibly some other syndrome that they're missing here?
Any ideas or feedback would be very much appreicated. I am at the end of my teather!

Your description & history of him = on the autism spectrum from everything I've learned about it, as many of those behaviours are uniquely autistic.

This also hits a little close to home, because I know for a fact that my 8yo nephew is VERY aspie, but when tested by his doc he didn't score high enough on some test to be considered autistic. I don't know what the test was, and I didn't ask my brother if he knew, but I suspect that whatever test is being used is some test designed with criteria indicative of "classic autism," in the more low functioning and severe sense and that the diagnosing doctors don't have a clue about higher functioning autistics. I also believe that because he's very smart, as all of us in our family have been, that he may have been able to intellectually process the "correct," responses and social reactions to the doctors queries - or at least close enough to NT to be a perceived pass - meanwhile internally being anxious & knowing full well he's putting on an excellent performance. All of this is speculative, but I've read and learned enough about aspergers (and myself) to know what I know and that he needs to be re-assessed by someone with expertise in the area, not his diabetes doctor. I've persuaded my brother to read [url=[url=http://www.chapters.indigo.ca/books/Complete-Guide-Aspergers-Syndrome-Tony-Attwood/9781843106692-item.html?ikwid=the+complete+guide+to+asperger%27s+syndrome&ikwsec=Home]this[/url]]this book[/url] & see for himself what traits I see in his son vs. accept my opinion, because I know full well he doesn't accept my opinion because I don't have a doctorate.. so I convinced him to not take my word for it and read the info for himself. Then he'll see that his son needs to be assessed by someone competent in diagnosing this. (aaaaand he's also going to realize he, too, is afflicted by it and always has been.. but that's another story that's still in the making.)

I would read & learn more about it in order to be properly informed, and then either speak to the same psychologist and express my concerns or seek out another one for a second opinion. Does this particular psychologist even specialize in AS or ASD? When a doctor can't see these obvious signs as being parts of the whole sum of ASD, it makes me question whether they should even be assessing people suspected of having AS/ASD - big time, because once you know what you're looking at/observing in terms of AS traits, behaviours, vocal sounds, motor skills, various developments throughout life etc.. it becomes crystal clear & obvious when you see it.

I don't know what situation you're in with health care, or what options you have but I think you might benefit from going to a different doctor.

What you describe sounds as exactly like ASD, but obviously my opinion is worth little more than some personal validation.

What I would do would be to make an appointment to talk with the person who did the assessment (without your child) and ask them to explain what test or guidelines they used and ask them to break it down for you exactly why, using basic speech and examples, they thought he didn't have ASD. A person may not tick all the boxes but still be on the spectrum. It may be that he is very rigid, has special interest, doesn't like get interested in other kids, but can still pick up on "social cues". That wouldn't mean he isn't somewhere on the spectrum. It could be that this is due to high intellect rather than instinctual ability.

I am a mother to a diagnosed boy, age 9. And I am also diagnosed. There are many times when I have felt near the end of my teather, but unfortunately you just need to take a deep breath and keep going. After you get a diagnoses there will be another challenge and another one. In the mean time, if you want support at school, try writing a condensed list of traits he needs help or patience with as well as high lighting his gifts so that he continues to get challenged as well, and share that with his teacher and the school's special needs coridinator. I always tell people when it comes to my child I am the expert. Mine child is nine so that's worth 2 Ph.ds. Also there is no such thing as an autism expert. It's too diverse a field and current understandings are always changing. This is why it would be good to know what assessment has been used. Best of luck.

[Moved from General Autism Discussion to Parents' Discussion]

Ditto to this.

Look through your insurance's "preferred provider" directory. If you can find a hospital-based developmental center, that is your best bet. You want a developmental pediatrician or a pediatric neuropsychologist - but ideally you want someplace that also has speech therapists, social workers, OTs, etc. Autism, especially on the "high-functioning" end, requires a specialist with experience to diagnose in young children.

The second thing: the diagnosis itself doesn't really matter - what matters is what you DO. If you see specific deficits in your child that can be addressed with specific therapies, ask for those. (For instance, speech - get a separate speech evaluation to make sure your child is using both social and verbal speech appropriately and get those therapies.) Start reading up on AS (there is a sticky of suggested books and an "index" of threads at the top of this board.) see if there are any suggested interventions that make sense to you, and start implementing them. If they work - that's a pretty good indicator your instincts are right.

On social skills, sometimes it takes longer for the gap between NT and AS to become apparent. Some children with AS really begin to struggle socially around fourth or fifth grade and deficits are readily apparent in middle school.

Whether or not to seek further diagnosis at this time, depends on what you want to do with the diagnosis. If you want to obtain certain services, then you may have to seek another opinion. If you just want to know for yourself and what do to, then it doesn't hurt to begin using some of the parenting techniques and supports that are good for children with AS.

It is so important as a parent to be validated sometimes. I get so frustrated with some of the mental health community and their ineptness at understanding AS.

Some tests I think are important are:

ADOS (there is now an ADOS-2 which is more sensitive to higher functioning kiddos)
SLDT-E - this is a social language development test to truly see if there is a measurable gap. It is so easy to be fooled as an adult by a child who is talking with a high vocabulary and interacting like an adult.

BTW - what were the social skills mentioned? Was it just one or several? Could they give examples?

He sounds a lot like my 5yo daughter, we are yet to get a diagnosis, we think of AS but having read your post not necessarily! Shes quite social, but its awkward and stunted, she speaks well but doesnt know when to stop, or what to say in conversations. She is also obsessed with the ipad and my iphone, she dreams about the games and seems to like pretending to be in a game. Again shes very bright but her motor skills are lacking. She is also doing well with reading and numeracy at school, I wonder what dx we will come out with!

Whatever you get a dx for, it will be monitored and checked regularly so it could change later on, but gifted is a good thing. I have felt very fobbed off by DRs, I have basically had to diagnose her myself and find out who I need to see and what I need to say to them to get a dx. We are nearly there but not quite. It feels like Im pushing for something that isnt there but Im not giving up because I know her better than anyone else.

Keep at it and let us know what happens!

Thanks everyone for all your advice. I think a second opinion may be the way to go. Wish me luck!

He sounds very spectrum-y to me, too. He sounds so cute.

I am going to add that there is also the diagnosis of PDD-NOS, (for now anyway) that might be a possibility if your son is missing a few check boxes. PDD-NOS is Pervasive Development Disorder-Not Otherwise Specified. Lots of kids on here have gotten that in their younger years and graduated to a stronger diagnosis when the social gap was more readily apparent. "Smart" also throws a lot of people off, as does being snugglie, speaking, making eye contact or any number of things that does not jive with their particular stereotype. I think getting a second opinion is wise.