It's officially Asperger's

[MrsKreamer]

My middle son (DS6) has officially been diagnosed with Asperger's. It has been a long road to get to this point.

I noticed his differences around age 1. He never hit his milestones on time, always had super meltdowns, late talker, etc.

At 3, he was becoming increasingly violent with his "fits" which sometimes resulted in my then 5 y/o son getting scratched, hit, etc. So I took him to our school district's Early Intervention program. I was told they would help evaluate him, get him into the right school program, and then point me to the right doctor to send him to, in necessary. (He pediatrician at that time was no help at all).

They evaluated him and reported that despite being "a little slow" (testing at an 18 month old level at 3.5 years) and the violent fits, there were "no exceptionalities."

His new ped then suggested I take him to another ped that specialized in behavior.

She evaluated him, and diagnosed him with: Severe Anxiety, Social Anxiety, Selective Mutism, OCD, and (very reluctantly) PDD-NOS.
I say reluctantly because, she believed that once he started school he would "catch up" and be fine, but giving him the PDD-NOS label would open more doors for him in school.

So fast forward to this year, and after 2 years of school...

I decided to have him re-evaluated by a clinical psychologist(I now realize that this is where we should have started 3 years ago!).

She evaluated him in her office, and had legnthy talks with a former teacher of his.

Her diagnosis was that he CLEARLY has Asperger's. He is also a slow learner (tested low average to borderline intelligence). She also told me that she doesn't understand how anyone trained to be around Special Education had any doubts that he has Asperger's. (We had trouble with his Kindergarten SPED teacher this pas year...she kept telling me that he was fine, pulling one over on us, and that she thought that absolutely nothing was wrong with him...)


Sorry, I know that was really long. So now what? I know that we will be sending him to his current school this year because they have an Autism class, and he was set to do that anyway. The Dr told me to contact our local ABA specialist, so we are going to do that.

What books can I read? How do I simply explain Asperger's to my friends and family? I have family that don't believe that Asperger's is even a real disorder.

I guess I am just looking for other parents going through this. I am feeling a bit overwhelmed at the moment.

 

[Happy 2 B Me]

I so dislike the friends/family that "don't think it is a real issue". Let this happen to their family and I wonder who would be a believer? I have no one with this or with autism in my family. My point is the people we know that just want to give advice but know nothing.

 

[wdw4rfam]

Been there. I knew something was off at 15 months, but when DS was 3, still not talking they finally called it a delay. We went to so many specialists that couldn't figure it out. Speech therapist gave up and wanted to get him one of those computers that talks for you. I shot that down fast- he was only 4 1/2 and they were going to call him non verbal and give up. He was finally diagnosed autistic at 5. We took thing into our own hands and did natural things ( mostly following Jenny MCCarthys methods), and he has made HUGE improvements. Long story short, he is now diagnosed Aspergers also. He is now talking so much we are in speech therapy, social classes, and more to teach appropriate talking especially in public. He still has melt downs and trouble with crowded or loud places. He's now 10, and I couldn't be happier with the constant progress. I used t worry about his future, but now with all the progress, I am certain he will be fine. I homeschool only because I dont want him in the "autism" program because he no longer has most of the behavior issues, and I dont want him to pick them up. Also, because he learn so fast, that I dont want noise from others ( when we toured there was a kis screaming constant- I am sure its common in that atmosphere), to get in the way of learning. He had his hands over his ears the entire tour. Also if something upsets him, it takes a while to get over it, and I can then just wait untill later to do his lesson. There are a lot of good books, cant think of one in particular- but I found MANY that all helped in a way. I cant believe there are some who dont think its a "real" disorder. Its an autistic spectrum disorder, that is the best way I describe it to people who dont know, but MOST do. The best advice is every little positive step, no matter how little, leads to bigger steps. Most people with this diagnosis are successful adults. My neurologist has it, a friends husband has it, and they say Einstein had it. Good luck, stay positive.

 

[EvangelineG]

Hi and welcome to the Aspie club! It is tough until you get your bearings. I was reeling when we first got our diagnoses, but it does get a lot easier. Both of our sons have Aspergers. They were diagnosed at age 7 (twins), and are now 12.5yo.

Some of the best books for us have been:

1. Tony Attwood's Complete Guide to Aspergers
2. The Explosive Child by Ross W. Greene, Ph.D.
3. Temple Grandin's The Way I See It: A Personal Look At Autism And Aspergers
4. Be Different by John Elder Robison

Some great books for those family memebrs that don't think Aspergers is a real disorder or who just don't get it:

1. Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm
2. All Cats have Asperger Syndrome by Kathy Hoopmann

(Both are short reads, and the second is a picture book.)

I put Tony Attwood's complete guide in bold, because that was the first book I read after my sons were dxed and has been a starting point for many other ASD parents I've known, and it is a very good book to start with.

My advice would be to read, read, read, and to do just what you are already doing here -connect with other parents and "Aspergian" adults. The forum wrongplanet.net has a good parenting section there.

And as the PP said Aspergers isn't the end of the world. As I've learned about my sons, I've come to realize that I am very likely mildly Aspie myself and my husband has a lot of traits too. We're both successful functioning adults, although not particularly social. I have every faith that our sons will be able to be happy, productive adults as long as we help them find their "niches", and I'm sure this is true for your son too.

 

[bookwormde]

remember that a diagnosis does not change your child it just allows you and his supprt teams to pick from the right sets of "tollboxes" to pick out supports and therapies.

Once properly understood by all in there enviroment (including themselves) and a supportive enviroment is established the changes and progress, especially in the reduction of maladaptive comorbid manefestations can be dramatic.

Sad that our kids have to suffer for years at the hands of incompetent clinicans

 

[kritter47]

As an adult with AS here (independent and employed, though my social skills are still at the more awkward end of the world). Before I tell you my thoughts, a few disclaimers - I obviously do not know your son, so none of this is directed at him personally. Rather, it's strategies I feel benefited me growing up and helped me avoid a lot of the common pitfalls that result in people on the spectrum needing some sort of lifetime support. Also, I did not get officially diagnosed until my teens, though much of that was that AS was a very rare diagnosis when I was younger and almost unheard of in girls.

So, as far as how to describe AS to other people, I usually fall back on the "my brain is wired differently, which means I process my input and output differently than a normal person" (and yes, I use normal for "average" people because being abnormal is not inherently bad. Trying to dance around it with cringe-worthy words like "neurotypical" to me only makes things worse). Tell them his inputs can either be turned up much louder or much softer than a normal persons, which makes him over or under react when judged against a normal reaction. Typical over reactions are to sensory stimuli like touch or volume. Typical under reactions are to things like body language or tone of voice. Your son may obviously vary. There are a variety of coping mechanisms that come along with that, such as stimming to give a focus other than the stimuli, obsessive interests where the person can be the "expert" and not have to rely on interpreting others and so forth. And obviously, the difference from a normal person puts impediments on forming social relationships until coping mechanisms are found. You seem weird, to put it bluntly, which makes forming friendships a struggle on both ends.

As far as where you do go from here, I hold what's probably a fairly controversial opinion in that I don't believe your expectations for your child should change in terms of social appropriateness. While I struggled greatly as a kid (including one epic meltdown from 12 year old me at Disney), those struggles and my other's reactions to them forced me to develop coping mechanisms that have formed the backbone of my ability to be independent. My diagnosis (and when I was younger, I carried others that went away when they changed it to AS) was not going to be a crutch for me to have to lean on. I was not allowed to skip lines or parties, even though it made my skin crawl and I could hear every conversation within a 10 foot radius. I was, however, given earplugs if needed and allowed to stand between my parents so I didn't have to touch familiar people. I was told I had to stay at family reunions for a set period of time before going away. I was not allowed to convince my family to stay home from fireworks shows, but I was allowed earphones+muffs or allowed to stay in the car during the show if it was something like a picnic. I was constantly, constantly reprimanded for talking too loud and too long, and if I pitched a fit, which I did at way-too-old ages at many a restaurant when I had the dreaded green things touching the white things, I was escorted outside to calm down, but I was still expected to eat at least part of that meal.

Yes, those things caused me a significant amount of stress at the time, and my mom has told me how difficult it was to watch me come home in tears from school because kids called me weird (and I was), but IMO, there is no substitute for learning social rules and coping mechanisms than being forced to live up to that standard regardless of what you struggle with. IMO, too many really well meaning people attempt to remove the stress at the time without realizing that it's a short-term pain for long-term gain scenario.

Now, this obviously depends on your level of functionality and if you can reasonably be expected to be an independent adult. My parents never thought otherwise, but there are obviously kids who will need lifelong support no matter the strategies people try to help them. Again, I don't know your son, so I can't speak to this.

But I can speak to me. Now that I'm 28, no one cares that I have AS, and I don't need any workplace accommodations (though I do have to take "cool off breaks" outside if I get into one of my Spidey senses that I can't turn off days, and I nearly murdered a loudmouth today in another cube but settled for silent, harmless stimming of thumbnail into pad of finger. I do not let AS define me or my abilities. The most useful part of knowing my diagnosis, at least for me, is that I can predict what will be stressful, get over the fact that it's my "fault" (i.e., my brain hardwiring) and not anything wrong with the scenario itself, and plan strategies to deal with the stress or simply psych myself up to deal with it. It informs my life rather than dictates it, which might seem like semantics but is pretty crucial to me.

 

[mdsouth]

As an adult with AS here (independent and employed, though my social skills are still at the more awkward end of the world). Before I tell you my thoughts, a few disclaimers - I obviously do not know your son, so none of this is directed at him personally. Rather, it's strategies I feel benefited me growing up and helped me avoid a lot of the common pitfalls that result in people on the spectrum needing some sort of lifetime support. Also, I did not get officially diagnosed until my teens, though much of that was that AS was a very rare diagnosis when I was younger and almost unheard of in girls.


But I can speak to me. Now that I'm 28, no one cares that I have AS, and I don't need any workplace accommodations (though I do have to take "cool off breaks" outside if I get into one of my Spidey senses that I can't turn off days, and I nearly murdered a loudmouth today in another cube but settled for silent, harmless stimming of thumbnail into pad of finger. I do not let AS define me or my abilities. The most useful part of knowing my diagnosis, at least for me, is that I can predict what will be stressful, get over the fact that it's my "fault" (i.e., my brain hardwiring) and not anything wrong with the scenario itself, and plan strategies to deal with the stress or simply psych myself up to deal with it. It informs my life rather than dictates it, which might seem like semantics but is pretty crucial to me.

Thank you so much for sharing your perspective on having Asperger's. I truly appreciate you sharing your thoughts with us. :grouphug

 

[Sparkly]

I also have aspergers- but since I'm only 18 and have only just left sixth form college I haven't dealt with getting a job yet.

I was diagnosed at 4/5 years old. Primary school was good because the teachers were trained to deal with special needs and so they were supportive and my classmates were mostly very nice to me. Secondary not so much, although I did make some friends.

I've always found it hard to make friends because I'm very socially awkward. Once I've warmed to a person I'm very talkative though!

 

[mdsouth]

I also have aspergers- but since I'm only 18 and have only just left sixth form college I haven't dealt with getting a job yet.

I was diagnosed at 4/5 years old. Primary school was good because the teachers were trained to deal with special needs and so they were supportive and my classmates were mostly very nice to me. Secondary not so much, although I did make some friends.

I've always found it hard to make friends because I'm very socially awkward. Once I've warmed to a person I'm very talkative though!

Thanks so much for sharing your own experience with us.

Your last line totally fits my son too, finds it very hard to make friends but once he does he can be very talkative!

When it comes to interviewing for jobs, have you thought about sharing your Asperger's with the interviewee? I have read from other sources, that often that is a good strategy to do during the interview since many Aspies have trouble with interviews. So, once they share that they have Asperger's it tends to go well.

Pixie Dust to you, and thanks again!

 

[AddictedtoDoleWhip]

Thanks so much for sharing your own experience with us.

Your last line totally fits my son too, finds it very hard to make friends but once he does he can be very talkative!

When it comes to interviewing for jobs, have you thought about sharing your Asperger's with the interviewee? I have read from other sources, that often that is a good strategy to do during the interview since many Aspies have trouble with interviews. So, once they share that they have Asperger's it tends to go well.

Pixie Dust to you, and thanks again!

I'm an Aspie as well, I've had a job before and I couldn't handle it at 19. It was just too much for me to go to college and then go to a job, I got stressed out easily because I had no time to unwind from school to job and then I had issues doing other things. If I just had a summer job, I would have done better. I'm 23 now, still in college and do not have a job. It's not really the end of the world if you don't have one and it isn't a sign that I'm going to be stuck at home living forever, I'm just trying to get through school so I can get a job in my career choice.

I would NOT tell anyone in an interview that I have Asperger's Syndrome, there is a bigger stigma to being an Aspie than having the Autie diagnosis. People will think he is using it as an a) excuse b) it's not really a real disorder/condition, he just wants sympathy. Most likely I have heard from those that have done it that they didn't get the job, they won't tell you why you didn't get the job but it's a big hint that way.

I would have him maybe try to apply to places that sound interesting to him. For example: I LOVE the Grocery Store it's one of my favorite places to be, and I would love to work there but no positions are available close by. I keep looking though, the bakery is a place I am interested in working or bagging. My mom wants me to work says I can work 10-15 hours a week if I don't want to work more than that and I probably will eventually. I may try to work again during school but my grades fell very badly and ended up on academic probation.

 

[MrsKreamer]

Thanks to everyone who has chimed in on this thread. I really appreciate it!

Somewhat off topic...

I went to the movies the other day, by myself and (before the movie started) the lady next to me starting to chat me up. Somehow we got to talking about the school district I send my kids to, and how the principal might be leaving...anyway I mention that my son has AS and she say "Oh, I've heard of that, that's what doctors say when they can't find what's really wrong with someone."

Wow. I didn't even know how to respond, and thankfully the previews started so
I didn't have to talk to her anymore.

 

[grumpy&princess]

Thanks to everyone who has chimed in on this thread. I really appreciate it!

Somewhat off topic...

I went to the movies the other day, by myself and (before the movie started) the lady next to me starting to chat me up. Somehow we got to talking about the school district I send my kids to, and how the principal might be leaving...anyway I mention that my son has AS and she say "Oh, I've heard of that, that's what doctors say when they can't find what's really wrong with someone."

Wow. I didn't even know how to respond, and thankfully the previews started so
I didn't have to talk to her anymore.

wow how rude of the lady. Even though I have heard this a few times esp when I have both of my kids with it. I have been told things like its all bad parenting, i spoil them to much, to they cant see nothing wrong with them. I always tell people even though they may look normal take them for a week and wait til the record skips and you will see what I am talking about. My friends who were skeptical and actually witnessed a meltdown are shoked as to how bad things can get and how easily stressed they actually get. If you ever need an ear PM me.

 

[hoosiergirl7]

It's so interesting to see the difference among children with AS. I knew something off after DS turned 3. Up until that point, he was normal, if not advanced in both motor and verbal skills. Walked at 10 months. Knew his alphabet before age 2. Would talk in full sentences at an early age and people would be floored when they'd ask how old he was to find out he was so young.

As I said, at 3, I noticed things that average kids wouldn't do. Repetitive behaviors. Getting annoyed when things weren't a certain way. He began to get angry easily and go on about it when he wasn't getting his way. Major things that just changed. I thought it was the terrible 3's but as he got older, it didn't change.

So at the end of his kindergarten year, we finally sought help and started seeing a clinical psychologist. At first she too just thought it was a behavioral thing and tried to help him with behavior modification. But the more time she spent treating him she noticed that he refused eye contact when she spoke to him. He had repetitious gestures that he did over and over again with his hands and face. Talking about things that seemed very intelligent, but didn't make sense. She also noticed with him that when he played with his younger sister that he often got angry with the way she was doing things because in his opinion she was doing them wrong (ie for him, there is a set order). So then she tested him for AS and ding, ding, ding - we had a winner.

We moved last year to a different state and sought the help of a new psychologist who we saw for less than 1/2 a dozen times because he angered me a lot. We walked in with info from his previous psychologist including testing results and he waved it off and negated the diagnosis saying that it was wrong and that our DS only had ADHD after 1 visit with our DS. With the fact that our insurance is limited on who we can go see and that we cannot afford to pay for it out of our own pocket, we are on the hunt for a new one. We have an appointment set up and I'm hoping this psychologist doesn't blow us off the way the other one did and actually listens to us when we tell him what works and doesn't work.

Best of luck to you.

 

[Schmeck]

If you decide to go the ABA route, realize that it is most effective if used at school and at home. Having 'two sets of rules' can be very confusing, and can set the kid up for failure at school, in an ABA setting.

 

[NotUrsula]

What they said, except for one point: you might say that the jury is out on whether Asperger's is a "disorder".

Personally, I don't consider it to be one. A syndrome, yes, but not a disorder. Disorder implies that there is something broken, and I don't like to look at it that way. AFAIC, DS is not sick, he's just different. I don't look at it any differently than being left-handed.

My MIL is 82, and she's left-handed. When she was in school she was struck with a ruler on the left hand if she used it to try to write, and was forced to use her right hand instead. (Her penmanship is nearly illegible.) Back then, left-handedness was seen as a disorder that had to be cured, but now we do not think that way; we accept that it is just a difference.

I think that Asperger's itself is just a difference. Some of the behaviors that it triggers are problematic and/or disruptive, and Aspergians (to use Robison's term) need to be redirected to alternatives for those behaviors, but that is a function of education and practice, not medical treatment. If you take the time to figure out what it is that they do not know and take the further time to teach them, they will almost always learn the needed skills, though they might be reluctant to make the effort to use them every single time.

IME, the most difficult part of parenting an Aspie is learning to judge when your kid is just being himself and when he is deliberately faking you out. It takes practice, and the more social skills training they get, the better they get a faking things, which from a parenting POV can be a double-edged sword.

 

[momofkids]

Based on the diagnostic criteria of DSM-IV, a child cannot be diagnosed with Asperger's if there has been a significant speech delay. Personally, I would question any doctor or psychologist that is unaware of this criteria. A child with a speech delay should have a PDD-NOS diagnosis if that child does not qualify for an autism diagnosis. All three disorders fall under autism spectrum disorders. I don't mean to sound like I am splitting hairs, but the wrong diagnosis can affect qualification for services.

Under DSM-V this may not matter since the disorders will likely be Autism Spectrum Disorders. I know it is just a label, but sometimes the label matters.