Autism - Dana Point,CA

My son has PDD-NOS (an autism spectrum disorder) and ADHD. I know some people have a problem with the "stigma" attached to having such labels, but if it weren't for his "labels", he would NOT be getting the help he needs. He has had an IEP since before Kindergarden and has gotten services that he truly needed like speech therapy (to work on communication/personal skills) and occupational therapy. Now he's in 6th grade and mainstreamed for most of his classes. He has a couple of "support" classes he goes to where they work on social skills, which is a challenge for kids with autism, it's treated as just another class in the 6th grade curriculum. He also takes a math lab class (because he is, unfortunately, hopeless at math) and a reading lab class in addition to regular Math and Language Arts classes. I'm of the opinion that you should take EVERYTHING that's offered. There is no such thing as too much support. If your school wants to test him, let them. They only have his best interests at heart. Even if he gets tested, they can't force you into anything. The final choice as to his education is up to you. You can always turn down any services that they offer you. But you won't get offered those services without that "label". I do think it's important to have your son be tested by qualified medical professionals that YOU choose, too. Let the school do their own evaluations, but if you have medical insurance, you should also be covered to have medical diagnoses done. These are, after all, considered "medical" issues, not educational issues. Get a referral from your pediatrician to a Child Developmental Specialist or a Pediatric Neurologist, follow up with a Pediatric Psychiatrist who specializes in ASD and ADHD. And I know you've tried 2 meds that didn't work. We've tried 3 or 4 and over the next few years will probably try others. The one my son's on right now has worked very well for him for 4 years, but might lose it's effectiveness next month. ADHD meds are all trial and error, but the biggest mistake would be to give up just because 2 didn't work. If he truly needs meds, do your best to find the right one. Good luck with this, I hope your son gets the help and support he does seem to need!

If kids are high functioning, which it sounds like your son is, meaning he does okay in school and has at least some social skills, autism/aspergers can often be wrongly diagnosed as ADHD. The hyper activity in particular, looks very much like ADHD, especially when kids have at least some social skills. The give away for autism verses ADHD is typically a complete lack of social skills. Academic ability can go in either direction depending on the child. So often what happens is kids that are hyper and have some social skills get the ADHD diagnosis first, until the lack of social development becomes more obvious as the child gets older. Essentially the social development stops and the autism becomes easier to see. That's what it sounds like has happened to your son.
Even though he's 10, he can be taught via behaviour modification/therapy how to act and respond in social situations so that he's able to make friends. The "label" of autism may or may not open doors for resources for you. Here in Canada, if they are high functioning like your son is, there are very few resources available. Basically unless the kids are essentially vegetables there are no resources for them in the regular school system. If they can learn to tie their shoes then they don't need help. At least that's how it works around here. Hopefully you are better off where you are and your son gets some assistance while at school and has access to therapy/behaviour modification to learn some of the social skills he needs.
Good luck!

I will be curious to see what the evaluation shows :) You mention that he struggles more at school then at home. Is that really the case or are his siblings at an age where they can simply be told what to do by him and they will follow along? The reason I ask is Autism doesn't just show up at school, so it would be unusual to have him be "fine" at home but not at school. On the other hand, my guy with Autism will look like he is in control at home, but really it is because we are "rearranging" other's behaviors to help him feel successful here - of course his peers at school are not going to do that :)

As far as the school testing him, I would only reconsider it from the perspective that I don't like how they do their testing (for instances, they did not test my son correctly). If I had to do it over again, I would have had him privately tested and then brought the results to the school. Because he tested "normal" at the school (like I said, he was not tested correctly - mostly because they could not factor in his other disabilities, which they had never had a student with before) and then I had my own eval done, they didn't want to accept it (*sigh* - what a fight that was).

Good luck no matter what you decide :)

Sometimes I think the only way a school wants to deal with anyone who is different is to stick a label on them. In a regular classroom, they can treat the class as a batch and process them all the same way. Anytime they have to deviate from that, they have to come up with a individual plan and that's where getting him labeled with a condition comes in. What you need to figure out is, will he get a better education as he is, or will an individual plan help your son have a better experience. Autism is a broad spectrum definition for a host of learning and emotional disabilities. You and your husband should talk with the school and the mental health dept to understand the process they are proposing and what it can and can't do. When you have all the information, you'll be able to make a good decision.

Well, for me, I would have him evaluated. I understand that labeling kids is not ever something that is a happy thing, however, the more you know about what might be going on, the more knowledge you will have to help your child. You could talk to his doctor. When a child is being seen for develpmental delays or behaviors, usually they are seen by four or five different specialist. We all know that it seems that children are just labled these days, but honestly, in order to be medically diagnosed with autism they have to have 4 to 5 different areas of delay. And ADHD can present itself some what simialr to autism. My brother is a specialist in ADHD. Two of his boys have it and his oldest son is quite like my daughter, who has autism. It is a hard road. I know. I am there. My dauther is 6 and is a wonderful little girl, just as your son is amazing too. These kids are here to teach us many things and one of them is that we are all different. We all think differently. Different things work for each of us. If I can help you in anyway, feel free to email me. Sorry if my thoughts are a bit jumbled, I have to go get my Lilly from school. I would listen to the teachers too. If they are good teachers, they are only trying to help him. Knowledge is power!
B.

It is common to have high funtioning disorders diagnosed at age 10 or later, and it would not be uncommon to have met all the developmental milestones on time and still have an ASD, however, it might be a little uncommon to have few social issues prior to 1st grade, but not out of the question. You should know that there are many different things this could be that are not on the Autistic spectrum. The one that comes to my mind is NVLD, which presents with overlap of both ASD's and ADHD, but has a distinctive LD component in Math.

I would suggest that you invest in a private evalauation right away. Since you need one quickly, I suggest that you consult a board certified Child Psychiatrist and ask for a referal to a Neuropsychologist for an educational-psychological evaluation. If you do not get treament from a psychiatrist for the ADHD, I would switch now. If you have time to wait it out over the summer, you might also invest in an evaluation from a Developmental Pediatrician, through the developmental pediatric offices at your nearest children's hospital. This may take several months, but it will give you the gold standard for developmental evaluations. What ever he needs (from geneticists, to OT's) will be called in, and you will not wonder if you missed anything ever again. In your situation, I think I would schedule both with a Nueropsychologist and a Developmental Pediatrician and do both. Use this evaluation data to keep the school honest. The school is only required to make your son functional, and you will want to supplement what they provide so that he can truly reach his potiential.

Unfortunately, you have already held him back a year, which puts him at an educational disadvantage, and he would have come to this point last year had you not been convinced to do so. You have to move on from here, but you should be aware that every test you read is compaired to his grade level peers for purposes of school, but to his age level peers for purposes of development. Go to www.wrightslaw.com and read "Understanding Tests and Measurements for Parents and Advocates" you may need to read this many times before you understand it, but it is imperative that you do before any of the new evaluation data comes in.

I can help more as you go through this process. I have two kids on the spectrum, and the oldest is an adult. I became an educational advocate out of necessity, and now I help parents navigate the system. If you need more than general advice, check the yellow pages at Wrightslaw.com for California, and find an advocate in your area who is also familiar with California law.

Beware, if the school is evaluating for Autism, they have good reason to do so, but it may have more to do with the program they already have in mind than it does with what they see in your son. In general, they only evaluate kids for things they are willing to serve, so you are probably in for an evalaution that finds your child to be autistic. I would make it my highest priority to get my own evaluation done first, one that I owned, and one that contained a medical diagnosis that I found comprehensive and trustworthy (even if you don't like it) know for sure that you have, and own the evaluation that holds his diagnosis.

Let me know if I can help any more, get the private evals ASAP.

M.

Just a couple of things; while I suspect that the diagnosis the school will come up with may be Asperger Syndrome, it could also be PDD-NOS, generally Asperger is the highest functioning form of ASD, while PDD-NOS is more of an "umbrella" as someone said below. Because of his math issues, PDD-NOS may be a more likely finding. Also, once a child qualifies for IDEA, he is to be served according to his educational need, regardless of what category he is identifed in. Services are delivered based on need, not diagnosis. This is the proceedural nature of IDEA, and you will need to understand it fully to get your son what he needs. Avoid any "blanket" ideas that make any of this sound simple, it is not that simple; it is extreemly complicated and that is why you need to learn which of the statements below are far too simplified, and dreadfully innacurate because they will cause your son harm if you don't know what your are doing here. I don't say that to scare you, but you should be ready for a process that will not be at all fun, it may be confrentaitional, and it will be more so if you do not educate yourself before hand. After skimming a few of the responses, I just want you to be very careful, and get as much help understanding IDEA, ASD (and possibly NVLD) and evaluation data as possible so that you do get exactly what your son needs.

Hi. I'm a school social worker. What I tend to tell parents as we're going through the evaluation process (for anything, but oftentimes it especially comes up if we mention Autism) is that IF you child can be correctly diagnosed, then we can really, truly individualize services to his or her needs. If your son is diagnosed with Autism then it may cue people (teachers, special services professionals, etc.) to react a little differently, intervene a little differently, and offer slightly different supports or services. I think it's a plus. Of course, it's a scary label/diagnosis, so it would take some getting used to. But if it's accurate, then your son will start to get more support in a more appropriate way. Most of the time in my district, a student with high functioning Autism would receive some combination of academic support (special ed teacher), social work/counseling, occupational therapy (even if only for sensory integration support) and speech and language (oftentimes for "social speech").

Unfortunately, making an accurate mental health diagnosis sometimes takes way longer than it should, as you know. It sounds like you've been very diligent in following up on concerns, so he's a lucky boy! He's been getting services and support all along. It's not all that unusual for a diagnosis to change as a child grows and develops.

Good luck with the process!!

Hi R.,
As a teacher I can say that it is very helpful to keep testing until an accurate diagnosis can be made and it definitely is helpful in improving the support for the child. Laura and KL gave some great responses, so I won't go on. As a teacher I have said many times to parents who are worried about having their child tested, "It is just another piece of information. Once we look at the results, we can look at how YOU want to proceed." Well my son showed some developmental delays at his fifteen month well visit. Our pediatrician recommended an evaluation, my husband and I decided to wait and try harder to help him ourselves. During the time between well visits we weren't seeing much improvement, and someone said why not get him tested? It is just information and you can decide what to do once you get it. It was a big moment for me. Sadly it was my fear that was stopping us from getting him tested. We had him tested, twice to get two opinions. Ended up LOVING the help he received. So I can totally relate to your husband's concern as a parent. Just having your son tested can be scary. I look at it now as something I had to be brave enough to do as his mother. And by all means, I think it is great when parents are involved in making choices once the results are in. Maybe your husband will feel better if he tells himself that whatever the test says, he is a good parent advocate for his son and will take on handling any "obstacles." I wish you all the best.

You said a couple things. Your son is shy (nothing wrong with that), he has friends (a few he probably feels comfortable with), he scored high on all other tests...he has not had any developmental delays...at home he is happy, confident and a leader...why are you putting him thru these tests? Could it be you are worrying too much about it and/or have unrealistic expectations? The moment you bring them to these "professionals", they are going to find SOMETHING to pin on your child. Have you ever just explored a tutor for him for Math. Not every child is going to exceed in every area, that doesn't make them mental! Could it be that the curriculum is not designed for him? Is he showing bad behavioral signs? All these you have to consider. Sounds to me like your child is perfectly fine. For some reason boys struggle more academically than girls.

To add to your response R.: Could it be that your child is just discouraged, dispondent and depressed because he cannot keep up with his peers...and they are pushing him out of his shyness/comfort zone to be like everyone else, so he retracts.

First off let me assure you, I empathize with you entirely.. I have a son that has had a bumpy road with diagnosis. When my son was in about grade1 he too was diagnosed with ADHD and we went through a trial and error process for a couple years as far as meds to help him manage.
At about 7-8 after being assessed by a child psychiatrist he was informally diagnosed with Asbergers.. this is an umbrella form of autism.
I want to reassure you that it is a good thing he is being tested, my son like yours, is very socially immature/frustrates easily/and lacks communicative skills. He is now 11 and we are still learning together.
Just a caution, if testing proves him to have some form of autism.. you mentioned that you have moved quite a bit, children with these disorders do not handle change very well, it's important to give lots of notice and explain in small steps to make him feel comfortable and use when-then explanations.
I do hope that this turns out to be ok for you either way, if you need support, I am more than willing to be a sounding board as I have been through it all with my son!
Good luck mama and I wish you all the best!

Hi! I'm in California too and have a 6 year old girl with Asperger's. Actually, her official diagnosis is High-functioning Autism. As much as you're worried about an autism label, Asperger's isn't viewed as autism in California yet! So you don't get much services-wide. Be careful of that!

Martha had a good point about seeking an independent assessment and really find out what's going on. Your son does has certain characteristics of an Aspie--being more comfortable around adults than children, for example. But a lot of the rest you mentioned doesn't sound quite right. Although no two Aspies present in quite the same way!

In our case, my daughter's issues were apparent in preschool. She wasn't playing much with other kids. She would constantly pretend to be characters from books and tv. She would tantrum when things didn't go the way she wanted. She did horribly with transitions! Getting the diagnosis and getting help for her has been fabulous! She doesn't tantrum as much. She has some good friends in kindergarten. She's doing pretty well academically. She still has a challenges ahead of her, but she's come a long way! And we're lucky in that the school she goes to "gets" her and is doing everything they can to make her school experience fantastic!

Good luck!
C.
www.littlebitquirky.blogspot.com