If you are looking for some quick emotional support probably do not read this. If you are looking to deal with the alphabet soup read below.
While some children on the autism spectrum do have a long list of additional distinct appropriate diagnosis, this is the exception. In most cases these "laundry" lists of diagnosis come from clinician who are well meaning but poorly educated, trained and experienced in the area of autism trying to use neurotypical criteria, perception and experience to diagnose autistic children.
The result is that they apply neurotypical therapies, which are not effective towards a long term positive outcome. Yes, sometimes when the co morbidity is manifesting itself in a way that is acutely damaging to individual, medication and other neurotypical therapies are necessary in the short term to allow for more appropriate therapies to take hold.
I will go through some of the list. And yes some children may have a distinct diagnosis but first the clinician must remove from the observations he(she) is using the ones which are manifestations of autism.
My first and “favorite” is ADHD. The inexperienced clinician sees a child who does not focus on the clinician's "task at hand" which is typically supplied though written of verbal form. First the task is not being supplied and the output is not being analyzed in the child’s "native" visual format (how attentive would you be if the task was give say in Russian). Second there is the assumption that the child would have interest in the request of the "adult". Why would he (unless he has received intellectual instruction in, practiced and generalized this social skills area) what the clinician wants is not within the child’s areas of interest. So then you have a child (who is bored) up and walking around exploring or "playing" in his visual "world".
For those of you who are not significantly Aspie, this needs a little explanation. We live our live through a visual medium. We think, play and learn though "pictures and movies". What you are seeing, when your child is "running around", talking or singing, shouting or humming and making apparently nonsensical movements, is your child taking on a part in a theatrical play, which he is enjoying in his mind. The best neurotypical analogy I can give is to "daydreaming" except the child is completely conscious and interactive with the play (neurotypical children do this to an extent but it is much less intense and is limited by there social "understanding" that this behavior will be viewed in “public” as odd) (unless they are practicing for a play). If you want to know if your child is ADHD ask yourself the following question. Can my child "sit" for extended periods (typically much longer than a neurotypical child) of time working (playing) on his area(s) of special interest? Does he focus on visual medium (of interest) for more appropriate lengths of time? Remember that visual processing is much more efficient so time spent on any one item will by nature be less unless it is exceptionally visually complex. If these 2 items are capabilities of your child you can be reasonably sure that your child is not ADHD (or ADD). There is also the issue of "executive function" which is quite different in autistic children. They do not "discriminate" the way neurotypicals do (in all ways). Facts are simply accumulated but not categorized or organized and are then processed by the use of non linear dynamics (much as neurotypicals process social skills). This leads to the appearance of lack of organization and "focus" (but are able to come up with solutions which neurotypicals can not). The next issue is medication. Some autistic children who are not ADHD or ADD respond medications by presenting a more neurotypical profile, and depending on the level of risk the medication has (most have high risk and if were up for current approval would be black label drugs)(some of the newest ones are better) this may be needed until more appropriate long term therapies can take hold (in some cases it may even help with the therapies initially) (but can be an impediment in the intermediate to long term).
Anxiety disorders, bipolar, RAD, ODD, OCD and so on are all primarily co morbid manifestations of you child trying to adapt and cope with a neurotypical social world with out the innate social skills of a neurotypical, and without the intellectual social skills training, practice and generalization. Additionally these may be from a world where much of what is expected of them is delivered in a "non visual format". For your children there behaviors which have warranted them such a large collection of letters are just their best logical way to adapt to the social neurotypical world, which they have not been trained for, so as to reduce or expel accumulated levels of anxiety which is unhealthy for them (unfortunately this is only partially effective so the manifestations tend to build on themselves). Again medication may "help" but have serious risks and do not get to the root cause of the anxiety and its maladaptive behaviors. Additionally if “environmental sensitivities” are not addressed and accommodated for, the level of stress from this can be annoying at best and excruciating at worst thereby raising anxiety level precipitously.
So what to do, I break it into 4 parts
As a parent educate your self to the greatest extend practical. For those at or near the Aspergers end of the scale who are just starting this process I would recommend Tony Atwood "complete guide to Aspergers syndrome" C/2007 available on
Amazon. It has many references to other works in the back for when you need more. It is also helpful for parents of children elsewhere on the spectrum but does not deal with the verbal communication issues. Attwood work is also available on video for those who are more visual oriented.
Second, find a clinician who I highly experienced with Autism/Aspergers. This should be there primary practice and they should be taking 100+ hours of continuing education in the area each year (or preferably teaching it) Unless you are lucky this will involve significant research to find the person and a long drive or a flight to get to them along with significant expense for the evaluation. What you will get is an unscrambling of the alphabet soup that your child’s diagnosis has become so that you can focus on his core needs from a fresh starting point and perspective.
Recognize and accommodate for your child’s environmental sensitivities and make sure his school does the same. And if you must expose your child to some “mall torture” or similar stressful situation or stimuli, expect the heighten anxiety and the perfectly logical manifestation that come with it (you would think that WDW would be the worst of this, but the “magic “ seems to for a great extent to negate the effects, could that be because for the large number of probable aspies involved in Disney’s creative end?).
Now for the most important part, obtaining and implementation of a curriculum to aid you child in developing the “missing” skills to allow him to function in a neurotypical social world with the minimum of effort and anxiety (to the extent that he wants to).
I have three major components, social skills, theory of mind and executive function.
While these need to be generalized, the primary place for this is in the educational/therapeutic setting. These are broadly accepted “needs” of Austistic/Aspergers children to enable them to get an appropriate education, and as such are cover by IDEA. World class clinicians in this area state that 2-4 hours per week of direct instruction and practice in this area is the minimum necessary for the “fastest” learners with more (up to the majority of there education time) for other areas of the spectrum (I am still working in my sons school to get to and adequate level). This can include both the standard educational setting and therapeutic setting (if you can afford them). Obtaining and generalizing these skills will allow you child to function in the “social world” with much less effort and anxiety, thereby allowing them to suffer from a minimum of co morbid issues typically well below the clinical level.
Yes in most cases it is difficult to get the “schools” to do what is needed and is a challenge and a process. Do not take it out on your local IEP team and school personnel they are doing the best they can with what they have, just try to get them educated. Drag the district and state into it, as it is ultimately there responsibility. Bring with you your references from major clinicians (books), your child’s diagnosis, and a copy of appendix A of part 300 of IDEA (you can find it on wrightslaw.com) for when they try to use state regulations to avoid the federal standard. Focus on what your child needs to be able to obtain an appropriate education commensurate with their abilities. If your child is on the autistic spectrum the items above are paramount. In addition to this the school should be adapting the academic curriculum to a more visual format (I am still working on this also).
Do not expect the schools and therapists to do it all, your support and generalization will be needed. And yes this is a lot of effort and stress but consider this, the effort and stress to accomplish this is only a small percentage of the stress and anxiety that your child is going to go through without these supports.
If you do not know how to approach your current clinicians feel free to print this out for them to read. Some will take it in a try to help you move forward. Others will point to the diploma on their wall or some other similar defensive actions. If they do ask them this, are autistic children am major part of their clinical practice, how much specific training in autism did they get during the acquisition of that diploma (typically less than 40 hours if that much), was that training from the dark ages (before 2000) (yes I know you would not phrase it that way), how much continuing education training have they a since 2000 specific to Autism/Aspergers (should be at least 50hrs /year), was it from nationally or international recognized and published educators in the area of Autism/Aspergers. If you have an alphabet soup diagnosis and are using neurotypical therapies the answer to virtually all of the above question would be none to minimal. If your clinician is still “in denial” then it time for a new one.
I hope this is helpful, I know I can be a little “direct” but after all its about our children’s needs
bookwormde
So you know where I am "comming from" I am a 50yo subclinical aspie dd from a long line of aspies. As I state to new poeple which I meet at support groups, I would have been very dissapointed if at least one of my children had not been and aspie. I was fortunate to have a 8yo ds who is clinical. I also have a 4yo ds who is more to the neurotypical side of the world and a neurotypical dw.
Nicole
. She's been DX with RAD/ODD/ADD/ASD. She is now 11 and her DXs will continue to evolve and change as time goes on. Also depending on what profession the diagnosing Dr is, the Dx outcome may be different,
Nicole
Nicole
yes ds has adhd bipolar aspbergers dyspraxia and a few dr's thought attachment disorder and anxiety. I can feel where you are comming from. SOme days I feel so so alone
marathons it until he finishes then is ready to trade in. Both kids, their favorite tv show is "America's Funniest Home Videos"- very visual humor. Either that, or they get on 
