Reason to NOT evaluate for Asperger's?

[h4ppyphant0m]

We're pretty confident that our four year old son has Asperger's. He's got a lot of the classic signs. Basically, he's really smart, but socially lagging. He's also got some pretty distinct sensory issues. As his mother and primary care provider, I have no doubt that he has Asperger's. I don't want to go into his symptoms as much as I want to know if there are any reasons not to have him evaluated?

We've worked really hard at meeting his individual needs and it's been a full-time job. Now he's four and has a two year old sister. She's a high energy toddler, so it's becoming more difficult to keep up with my son's constant needs. We are now considering having him officially diagnosed so that we can access Asperger's resources in the community. Until now we've been adamantly against having someone label him. We know that he's got specific needs and we meet them.

So tell me - how did you decide to have your child evaluated or not evaluated? Do you regret your decision?

[Emmeline II]

Labels often happen whether or not a doctor gives them. In K my son was officially "label free" but he had an unofficial label, "behavior problem" and they treated him like one. Now ds is at a new school which he started at with an official label and this has helped the school be more understanding; they've never known him without the label so they don't have to unlearn negative impressions. An evaluation may find things you didn't realize were an issue or suggest causes you hadn't thought of.

You may not get an Asperger's diagnosis at such a young age. Ds evaluator was not yet ready to give ds that diagnosis at 6yo11mo because he is at the cusp of their diagnostic age (7yo) and what puts him furthest into the spectrum (social issues) may improve with maturity and therapy (for social reciprocity and pragmatics). She wants to reevaluate him in a year.

[Linda on the move]

My DD is 14 and has a couple of evaluations. Her current main dx is Asperger's, it used to be PDD-NOS. I don't have any regrets over getting evals.

Even with an official, dx, you control who has that information.

An official dx, opens doors for special services in the community and accommodations through school. It opens doors for your child to have someone other than you working at connecting with them, helping them, finding ways for them to reach their potential.

Right now, you are diagnosing and treating your child yourself, based on what you read on the internet. To me, that is obviously a very limited plan. It doesn't allow your child the best life possible.

My DD is old enough that she knows her label and knows what it means and even has a book written for kids her age with Asperger's. Because of that, we've been able to talk about how she feels about it. She likes knowing and having her label. It means that she doesn't have to work at "acting normal, trying to pass."  She always knew that she was different, and she felt bad about it. When she found out that she is perfectly normal for someone with Asperger's she started feeling a lot better about herself, more comfortable in her own skin.

[h4ppyphant0m]

I really appreciate the input. I kind of suspected that seeing a specialist is the right way to go -- I just get so nervous about it all. I grew up as a special needs person as well, except my needs were physical and the labels were not pretty.

We have an appointment with his regular pediatrician on Monday and an appointment with a specialist on Tuesday. Should be a busy week for us. Thanks again for your replies.

[KCMichigan]

 One of my DDs had been evaluated from birth from being premature. Early on she was dx with gross motor delays and social delays.

So in a way- she has always had a label of some kind (preemie, delayed, etc). She transitioned from Early Intervention therapies to an IEP at 3.5. Along the way she gathered a mild CP dx and a PDD _ NOS dx. We did PT, OT, and social skills classes. We got some sort of community support and/or  school/ Early Intervention/insurance based therapy from age 9 m to 4.5 years.

Now at 5.5, I doubt she would qualify for either---though Aspergers has been tossed around. She is quirky, but has come so so so far in the past 2 years in the social skills. She has emotionally immature/delayed development--- but has a very deep thought process and rich spoken language. She is very very bright, but does not really 'get' her peers and has some sensory issues that linger. Academically she is a learner and is way ahead of the curve for her age. BUT since she is on par academically (ahead) and she does not have any behavior 'problems' (just odd mannerisms) the schools no longer offer OT services since her academics are not impacted by her behaviors. I am ok with that too. The 'label' allowed us to get some therapy benefits when we needed them and clearly they helped. If needed we will revisit services again if needed- most likely it would be looking at Aspergers instead of PDD_NOS. Like kids, labels can change and evolve as the child themselves mature and get older.

Honestly, the label let us get PT & OT through our insurance and also made getting an IEP through the schools a quick process (she got OT & PT through the schools). The huge amount of early therapy has helped her...there is no way we would have had access to those services without a label of some kind. I was not fussy about what label. If they wanted to go w/ ASD fine, ECDD (early childhood developmental delay), or PDD _NOS. It did not matter too much since the therapies that a 'label' made available were very similiar with all those label. I know my DD is NOT a label at all.. I simply thought of getting a label as a tool to help her succeed, the therapies were the most likely way to achieve it.

I dont regret it for a moment. Therapies now (and when she was younger) are much like play to her and we saw so many gains made. The community support also was a wonderful thing. I would not change how we approached evaluation/testing/ and the therapies we got for our DD.

Her teachers know her history, as does her Pediatrician. I kind of like the thought that so many eyes are keeping watch over her, so if she starts to flounder- I feel that due to her history, mediation would be faster and more quickly put in place than if she was not 'labeled'. But that is just my view point- we are in a great school that has been nothing but supportive.

[kbins]

I believe the stigma of 'special ed' and "handicapped" or "disabled" labels that used to be even in our generation, is so minimal now. Kids are taught inclusiveness from such a young age for a variety of differences (heritage/color, language, physical differences and mental).

Our experience is that the label has helped us to get the accommodations and adjustments necessary for our son that would not have happened otherwise. It also has gotten us access to insurance coverage for services. We started getting his services well before we got a label but ultimately, once we hit school, the label became important. Even if we were to home school, the label opened up a world of information and resources we just wouldn't have had otherwise. The evaluations also helped us to pinpoint therapies. We might have been too narrow in our approach otherwise.

[Mittsy]

I don't like the label at all, I don't like how the label will affect my hs'ed child's ability to get services she needs, and for a good while I felt we were managing the majority of her issues just fine. But, right now I think the label will help her more than it will hurt so we're in the process of getting her a dx, I just hope we will still be able to hs.

[contactmaya]

Your question made me think of this quote (below) which i had recently read.  I like the way they approach the issue of 'labelling'- as a "shorthand to describe a cluster of symptomic behaviors."

From http://www.handle.org/about/what-is-handle.html

<<HANDLE prefers the the term "differences" rather than "disorders," in celebration of neurodiversity and the uniqueness of individuals. However, HANDLE acknowledges mainstream labels and diagnoses as a form of shorthand to describe clusters of symptomatic behaviors.>>

I havent read the thread, and am about to, but wanted to post this in case it was of any help. 

[Rik-E]

My son is 7. I learned of SPD when he was nearly 6 & he started OT for sensory issues soon after his birthday. We were unsure of the need for the official diagnoses process as well, even though we knew he most likely has aspergers from his behaviour.

Now he is really struggling in school (he attends a Waldrof school so much easier on him socially than mainstream) but the school administration refses to do much becasue he is undiagnosed -- the special ed person even says he 'most likely' has aspergers and tries to help.

So in short -- yes, get the official assesments and diagnoses. Then if you do need help at some point it will be available to you.

[DaughterOfKali]

I've never regretted getting my son diagnosed.  He was first diagnosed with PDD-NOS at age 3.  When I had him re evaluated this past summer (age 7), he was diagnosed with Aspergers and ADHD.

(I had him evaluated by a Neuropsychologist.)

There's been nothing negative about him having a label, it has only helped.

[Poddi]

My first son was diagnosed with PDD-NOS at 7.  I think it's helped him a lot.  The school offered him extra help and various things to cope with sensory issues.  It makes going to school more pleasant for him and help him learn better.  I have no regrets so far.  I don't know what other "normal" people think of your kid.  But for our kids (and ourselves) it's pretty obvious that we're different.  Everybody else can tell we're pretty weird just by observing for a little while.  Not having a label won't make people feel we're normal.

[tankgirl73]

I try to look at the bright side of labels.  I love that description of a label as a 'shorthand for clusters of symptomatic behaviors'

We didn't get the dx for my son until he was 12.  To tell the truth, though I had long suspected ADHD (which was confirmed), I had never considered Asperger's until very recently before seeking out dx.  (He's very very social, which threw me off -- now I understand that it's his social difficulties that are part of the AS, rather than lack of *desire* for socializing)

Prior to the dx, I had 3 main kinds of problems.  1) me feeling like I had failed somehow as a parent, 2) him feeling like he was stupid and weird, 3) others wondering what was wrong with him, kids avoiding him, parents looking at us funny.  None of the 3 were so common, frequent, or pervasive to be a real problem, but they were there.

Now, with the dx, it's a very quick shorthand.  Signing him up for a camp or a class, I can put on the form under medical issues that he has AS.  So now the teachers know quickly to expect certain behaviours from him, and he won't be unfairly penalized for it.  So that's #3.

#2, he still does sometimes lapse into thought patterns like "I can't help it, I can't do any better than this because I have Asperger's" -- which the therapist says is pretty common for kids his age.  But for the most part, it's helped him.  He knows that every kid has strengths and weaknesses, and knowing that there are other kids with similar problems to him helps, and knowing what his weaknesses are helps.

And for #1, I know it's (probably) nothing I did.  It sounds like you're pretty comfortable with that aspect already.  But still... even though I was certain for years that we was ADHD, getting the official dx was still a relief.  "I wasn't a hypochondriac, I wasn't seeing things, I wasn't over-reacting... I was right!!!"  Validation!  It feels good.  :)

[The artist]

I'm with Tankgirl on this one.

We're in the process right now of getting a diagnosis for our 4 yr. old DS whom I am sure has AS. The problem is, Asperger's is rarely diagnosed when they are so little. If you did seek a diagnosis (like we are) it will more than likely come out as PDD-NOS (pervasive developmental disorder - not otherwise specified) even if he were an Aspie. A mom in our community that I talked to said it took her almost four years to get a confirmed diagnosis of AS, and her son was 3 when they started. While Autism in general can be diagnosed early, Asperger's is a different and seemingly more evasive animal. It also shares many symptoms of other things.

The best part for us is that he can go to the special needs preschool for the rest of this year, and they are really working hard with him on his deficits. Next year he will go to a regular preschool, but they will still be working with him. There's a really good chance he will be able to enter typical public school with just an IEP, and have a positive experience. This wouldn't have been an option had I not sought help from professionals. I have no regrets whatsoever about looking into it, and I don't mind waiting for the official label. I'm just so thankful to have help! :)

It's hard to comprehend that the happy, giggling, little guy I pick up from school now is the same screaming, crying, puddle I used to scoop off of the floor just a few months ago!

[LynnS6]

The other thing I wanted to add to these great posts is that if a child has behaviors that make them clearly different from other kids, they will get a label assigned to them by people who are simply seeing their behaviors. Our ds has mild (very mild) special needs, but one of his issues was delayed fine motor skills. When his 1st grade teachers started to ask him to redo his homework because it was 'too messy', I was able to say to them "He's got a fine motor delay. We're working with an OT on this, so please don't penalize him." The fact that we had a diagnosis really helped that conversation.

The only reason not to get an evaluation is if your child doesn't need access to services or if you think the diagnosis will count against him. So, I know there are parents who want their children to attend a private school. If their child has a special need, the school will say 'no'. So, they keep the diagnosis separate from the school stuff.