Concerned mom needing insight

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This is my first post here and I'm just now coming to terms with all this, so forgive me if I ramble. I have an 8 year old son that I've always thought fell somewhere on the autism spectrum. He is very bright and articulate, but has some definite stimming behaviors-- wringing his hands, occasional rocking, and almost constantly touching his head and moving around. He is also always deeply fixated in one topic-- always having to do with science/engineering. He can engaged to talk about other things, but will always come back to his topic of interest.

I've never been overly concerned with these behaviors. My husband and I try to be patient and understanding, and have never really raised the issue with our dr. They've never really brought it up, I suppose because he had no language delay and we dint visit the dr terribly often.

However, now that he's getting older, I'm wondering if I should seek an official diagnosis. My husband and don't like the idea of "labeling" and just want to encourage him to be his own brand of normal. But he is having trouble learning to read and write well, so I'm a bit more concerned. I would like to know what others think. What has been helpful and is an "official" diagnosis necessary. I know I probably should have looked into all this long ago, but he functions well and doesn't have any real behavior issues like tantrum or aggressiveness. I just want to help him be as successful as possible. Thank you for any insight!

We got an official diagnosis for our son (7) because we wanted to know for sure AS was what we were dealing with. Our son started talking at a very early age. We have a joke in our house that he started talking before he was one and he hasn't stopped yet. As our son got older we noticed that the kids around him started to show interest in other kids, but our son did not. This and lots of other things lead us to seek out what was going on. Now that we know what we are dealing with we can better deal with problems as they come along.

I don't know as an official diagnosis is necassary, unless you think it may help your child get needed services through the schools. ( we homeschool so this is a non issue for us), but I think it helped us.

My son and I have our own unique brand of normal, and Aspergers is part of that.

PS. Try Dolch word flash cards to help with reading. You can find them free on line. They worked great for us.

My 2 cents....

As AS wasn't even recognized as a disorder when I was a kid, I never had the chance to "get help" with my situation.

The big issue you and your husband should be concerned about is your kid being "labeled." If he has AS, he has AS (or Autism).

However, once he has a diagnosis (Dx), it can be a curse AND a blessing in his future. Frankly, if you can get a Dx done by a doc who will keep the Dx "off the books" then you and your son will know the truth and can see about what options there are to help him grow into a fully-functional person in a NT world. If he's mild enough, he'll just be seen as "quirky." If he's symptomatic enough that he can't function in the NT world, then his Dx will help him get access to services that require a formal Dx to qualify for help. In any case, it should be HIS CHOICE when others find out about his condition (if he has it).

"Off the books" means you need a doctor who will agree to traditional doctor-patient confidentiality (REFUSE TO CONSENT TO THE HIPPA FORM. PUT "REFUSED FOR CAUSE...TRADITIONAL DOCTOR-PATIENT CONFIDENTIALITY" ON THE FORM; that should mandate that nobody can access his file without his specific written consent). You will also likely need to pay for this work out of your own pocket. Let it go through your health insurance and the attempt to Dx (and perhaps the Dx itself) will be floating out there in someone's file, and the way HIPPA really guts privacy, you never know where it might pop up. Any formal Dx can be in the doctor's file and in a sealed envelope...for your son to decide when and how he chooses to tell others.

I only give this "mixed message" because you will quickly see on this forum that the AS community is divided on the value of a formal Dx for those who have AS...particularly if they made it to adulthood without being diagnosed as such. There is so little out there to help people with AS/Autism to start with that a formal Dx doesn't open that many doors. As far as legal protection, well, I can say first-hand that EEOC is a joke and ADA only gave employers a reason to avoid hiring those with disabilities (potential litigation risk). The law mandates that employers and other institutions make "reasonable accommodation" but the definition of that means it's whatever suits the employer. AS has a myriad of symptoms of which any or all can be exhibited to varying degrees from person to person. It's not like making a workplace wheelchair accessible.

Severity of symptoms in AS is a double-edge sword. Being "mild" means you can try and pass for normal but struggle with how AS affects your daily life and have a hard time being formally diagnosed. Being "severe" means there will be little question that you have a disability, but the odds are you have little chance of enjoying what most consider to be a "normal" life. I'm not sure the middle ground is any better. So, you hope to be "mild" so you can live a very functional life, but a formal Dx is difficult to get and playing the "disabled card" at work could do more harm than good.

Good luck with whatever choice you decide to follow.

By having trouble reading do you know if hes dyslexic or not?

Yeah... autism doesn't really affect reading ability. Hyperlexia (early, easy reading combined with comprehension difficulty) is the opposite and is pretty common on the spectrum. Have you considered an evaluation for dyslexia?

Autistic traits are not a reason to seek diagnosis unless they are causing impairment--as you said, his rocking and such is harmless and not cause for concern. There are after all more people with autistic traits who don't need diagnosis than people with autistic traits who do need a diagnosis--autism fades into the typical rather smoothly, and if there is no impairment there does not need to be a diagnosis.

However, it is not unusual for impairment to only show up later on in a child's life, when demands on the child outstrip his developmental ability to meet them. At that point a diagnosis would make sense because it allows the child to get whatever help he happens to need.

Help him find a book that interests him, and he'll learn to read practically overnight. My god, the instant I found a book that really captured my interest, I became insufferable. Once I got through reading that charming book about the cat who had the litter of kittens, I picked up on the Little House on the Prairie series and read the whole bloody thing. All of it. But the thing is, I needed it to be something that held MY PERSONAL INTEREST.

And if you want him to write well, get him a book on calligraphy. If he ever picks it up and reads it, he'll practice it to death if he's like CERTAIN Aspies I've known. If he is anything like that kind of Aspergers, he'll take any skill he decides he wants to develop and hone it to the point where it has you shaking your head in disbelief. Insufferable! And wonderfully so if you understand Aspies.

Best of luck.

A diagnosis is not going to affect/effect his ability to read ... and yes, I do know that is not what you meant. However, please take the time to just sit back a bit and look at what really is a concern and what is not, and then just do whatever you believe is best along the line of actually nurturing (both training and teaching) your son ...

... and, of course, welcome to WP!

I look at my diagnosis (off-book) as being a great breakthrough in my life, but it only happened this year at age 42. I use the analogy of color-blindness. I missed a lot, and misunderstood a lot of things, because I never believed I lacked such a huge ability. I wish I'd known sooner.

Maybe you can read up here and teach him some of the strategies the fine folks here have employed, and he can have the best of both worlds.

For kids (and adults, but in different ways), I think that getting the "official diagnosis" can be beneficial in a couple of ways (both of which seem a tad cliche in the world of ASDs, but seeing as you appear to be new, I guess that is beside the point.)
You mentioned that your son seems to have problems learning to read and write well, and (if you live in the US, and some other developed countries), if he has a diagnosis and is in a special education program fit for this diagnosis, he can receive help for these problems and might be able to receive some sorts of modifications. Based on the little information you gave, it doesn't appear that your son is too deeply affected by many of the issues people with ASDs experience (again, I am just going on the info you provided), so associating him with "Special Education" may be an arduous task. But, as mentioned before, if he is really having difficulties with some things, it may help because he can get the assistance and modifications that so many of us with ASDs get in the developed world. Personally, I am in the ASD program (I have Asperger's Syndrome), but I am in no special education class, and I am fairly proficient academically. However, I have other problems with sensory things (particularly noise), and if I become stressed or agitated, I can "take a break" from class (usually anywhere between 5 and 15 minutes), which I wouldn't be able to do if I didn't have the diagnosis (because I then would not be in the program.) Other kids with AS have more assistance, though; it really depends on the person.
Another thing is that, when your son starts reaching puberty and if he does have an ASD, he may start to feel socially ostracized (if this hasn't started already.) It really is a scary thing to think about, though I'm not a parent. People who are diagnosed later in life remark on how they just thought they were "weird" and that's why they had no friends and nobody liked them. They also might think that they're they are the only ones, but knowing that there is a name for the condition that they may have and that there are, in fact, other people with it may be experiencing similar thoughts/feelings can definitely be advantageous. You have to be careful, though, as some people use this new-found information to make excuses about their present and past behaviors.

I was not diagnosed until I was 40 last summer. I spent my childhood, teenage years, and the majority of my adulthood wondering why I was different I was constantly questioning my sanity. I thought I was learning disabled at least that is what the school system told me. Since everyone was telling me I was learning disabled I gave up on the idea of higher education I thought it would be something I could not handle because of my "learning disablity". I went for diagnosis in 2010 I was found to have Asperger's syndome and they found no signs of learning disabilities. The school system pretty much cheated me out of a proper education warehousing in the special education program in my school. If I had a proper diagnosis I could have been steered in the right direction instead of warehoused. I have only been able to get low paying go nowhere jobs, I constantly feel I have been cheated.

The time I spent in special education was the worst time of my life I was put in a classroom with kids who hated me for being "smarter" than them. I was also mistreated by the NT students who would say "if your in those types of classes then your stupid" no matter where I went I was some kind of pariah. When I had to deal with NT students in lunch, gym, studyhall, art, or anyother situation the teachers did noting to stop me from being tormented sometimes right in front of them. I had one teacher tell me he does not have trouble in his class until I show up. I was the trouble maker for being the constant victim.

This is a tough question, and there are MANY factors which I would consider, if I were in your place. I agree that a "label" is a serious matter, and it could cripple your son's ability to get into some careers, to own firearms (not that I assume you do or don't approve), and it could affect any insurance (medical and auto liability), and so forth. If your son is functioning at school, and is not posing a problem socially (more than any typical 8-year-old might, LOL), then it might not carry any advantage to have a formal diagnosis. On the other hand, if there develops any problem at school or in the family, then the longer you wait for professional advice, the worse it might get.

I would suggest that you read through the posts on this forum, and get acquainted with the traits of Asperger's and Autism, and what kinds of things to watch for (good & bad). Know that you might have the next Bill Gates or Thomas Edison in your household. (Both notorious Aspergerians; per general opinion).

One tip, which I hope serves to help and not to frustrate, is that if you can engage the help of a private therapist who does not participate in medical insurance, you can go very far without any diagnosis. I know that's costly, but at least it's 100% off the records. It's mainly the insurance providers who need a textbook diagnosis to pay out for treatment on, and as I said, that can be a very severe "GOTCHA" later in your son's schooling and career. I'm 44, and have had a wrong diagnosis of record (dating from when I was ten), nearly cost me an excellent job at an electronics engineering firm. The Cal-OSHA was reviewing employee background records, and wrote a letter to my employer that I "might be disturbed and dangerous", and that they would put a flag on the company's workers compensation file, and add a surcharge for a dangerous employee. Never mind that in 44 years I've never even been in a fist fight, and I'll do just about anything to make other people happy, and just about anything to avoid trouble. It's all politics at that point. Luckily, the boss knew me well enough to laugh off the letter, but that was indeed lucky for me, as most likely I'd have been fired by anyone who didn't know my reputation in the community for so long.

Charles

I was not diagnosed until three days after I turned 60 years old and have gained an incredible understanding of myself in the year since that time that I deeply regret not having when I was younger. The things that you describe (minus the reading difficulty, which incidentally might be due to distractions as your son obsesses on other things... that happened to me too and still does) do sound very much like Aspergers, but as always only a professional can say for sure. The knowledge and awareness that you (and ultimately your son) gain in studying and learning about autism in depth will be the best benefit which you will receive. That said, it should also be pointed out that an official diagnosis at his age will qualify you and your son for various benefits and support that are simply not readily available at my age. However the point that zer0netgain makes about it being a two edged sword is unfortunately quite true in today's world and part of it depends on the local culture and attitudes where you live. The decision must be yours, but by all means research the subject thoroughly and learn as much as you possibly can about autism because that is where you will gain the most benefit as well as through any understanding and educated guidance you may be able to give your son in order to minimize the pain of dealing with the NT world. This forum is an excellent place to begin as well as my favorite five AS links shown below. I had none of these when I was growing up and my life has been agonizing, simply because I had nobody to talk to or who could truly understand me. Dr. Tony Attwood's book "The Complete Guide to Asperger’s Syndrome" is also a good place to start for your own understanding... he is a recognized authority on the subject of Asperger’s Syndrome. Your son is already at an advantage in that he seems to have your unending understanding and support. You can be very proud of that since it will go a very long way in making his life easier if he does indeed have Aspergers... it will give him somebody whom he can always trust. Many of us lack that kind of support, which is why we are here.

http://www.wikihow.com/Relate-to-Someon ... s-Syndrome

http://theotherside.wordpress.com/autis ... dvantages/

http://autism.lovetoknow.com/Aspergers_Checklist

http://theemergencesite.com/Tech/TechIs ... rs-ADD.htm

http://www.tonyattwood.com.au/

You can own firearms if you are autistic as long as do not to intend to harm yourself or others. The only job that might keep from employing an autistic person is the military.

I worked as a civilian contractor to the Air Force for 18 years (not that I did not have a number of conflicts with them). My talents were so well known and in demand that one high level representative of another military contractor who routinely rubbed noses with Pentagon brass spent several years after I left, trying to talk me into going to work for his military contract. I just wanted to get away from it all, live my life and get a little bit of peace and quiet alone in my Aspie hideout.

But on the other hand, I did not find out that I was autistic until another 18 years after I left that job. I can only imagine the feeding frenzy and efforts to crucify me that might have resulted if it had been known at that time.