Just Diagnosed with Asperger's

Special Needs Asperger's Syndrome
1

Hi Mommies,

My beautiful almost-four-years-old boy was just diagnosed (today) with Asperger's Syndrome. For those who may be unfamiliar, this is a developmental disorder characterized mainly by poor social interactions. There are other distinguishing traits, but our son doesn't seem to have any of those. He does, however, clearly have trouble socializing (or perhaps simply doesn't care to) with other children.

My question is, do any of you have experience with such a diagnosis, and what did you do to follow through? Did you seek multiple opinions, request special services at school? I guess I'm mainly just reaching out to see if anyone has had a similar experience, as the diagnosis just came today and we aren't sure what to do next.

Finally, please know that we aren't devastated and do not feel that anything horrible has happened. We know that our little boy is going to thrive in so many ways, even if he may never be a social butterfly.

Thanks in advance!

2

I am also a teacher turned stay-at-home mommy, and loving the transition! Though it's a little hard in September, isn't it? :)

I just wanted to let you know that I've taught 4 wonderful students with Asperger's, all of whom were highly functional and really bright! They were all identified a little later than your son (2nd-5th grades), but were very successful in learning social skills with the support of various specialists in our school. A speech therapist can really help with language (sometimes kids with Asperger's can speak a little louder than they realize, or with less expression), and this can make a huge difference in social situations. Our counselor also helped my students a ton- both by encouraging them to talk about their emotions (often difficult for them to get in touch with), and also to help them role-play appropriate responses to social situations. Both specialists helped my students learn to listen well in conversations- a skill many of us could still use some work on!

One of the biggest challenges I saw was with bullying, and the counseling played a large role in helping these kids respect and stand up for themselves appropriately.

My advice is to keep talking, talking, talking to him! About everything! The more he talks about how he feels, the better. And if possible, get him some counseling now. A really good social worker or therapist, particularly someone with experience along the autism spectrum, can help him learn these skills early!

And just to let you know- I still see all of those kids from time to time. They come visit me (or used to, until I stopped teaching this year), and they are doing so well. All of them!

You're such an awesome mom. Your love for your son shines through in your request. I wish all my students were so lucky.

3

I my opinion too many kids are being 'diagnosed' into categories. Years ago kids were shy or dreamers or had a lot of energy. NOW they have Asperger's, ADD or ADHD. Lord only knows what category Bill Gates would have been stuck in or how much medication he would have been given. I know we never would be typing on our PC's. This is personal pet peeve. Seems the educators want every kid to sit quiet and respond when asked, like little robots. Can you say 1984?
Don't worry about your son, he will be fine, just keep him away from doctors who like to diagnose. It's a proven fact that many kids on the 'autism spectrum' are extremely bright.

4

I would look at the autismspeaks.com website. They have loads of information for parents and families. You can find local resources from this site too.

5

good job for not panicking! all your son now has is a "word" used to describe his personality. for his entirely life you probably considered him somewhat less social than his peers, and it was no big deal. i'd read, educate yourself, but realize that you're going to end up reading about kids with significantly lower levels of functioning. be glad your son is doing so well, and dont get scared by anything you read. he'll be fine!

6

Hi Tova
Is Asperger's Syndrome genetic? Do family members have it? Just thoughts to think about. My suggestion is to look into some alternative therapies. You are home anyway and they can be fun. You have nothing to do that is more important than him because you are opting to stay home with him. Also check with alternative medicine people. Your local health food store may be able to help.
I am working with Intervention Therapy now with some young children, it helps many things. I am not far enough in to know whether it helps social behaviors because that is not our issue yet.
God bless you
Talk to your mom, she may have stories
Karen SAHM married 38 years to the greatest hard working man who loves me even when I am not lovable, 4 adult children 37, 32 married and gave us a grandson this summer, and twins 18.

7

Wow, I don't think I have ever seen such a positive reaction to what would certainly send a lot of us off the deep end.

My older brother, now 39, has Asperger's. If you look back on a lot of the men in our family, it's clear that some of those traits go wayyyy back, with vastly differing circumstances. My granddad was the town pharmacist and a beloved community leader. My uncle is a surgeon, incredibly talented but somewhat awkward to interact with. People seem to ignore the social difficulties the more sucessful the person - almost like they're more willing to think of it as eccentricity associated with intelligence.

My brother's Asperger's is coupled with some pretty severe learning disabilities and a family history of depression, so we all had a pretty complicated time of it when he was growing up, especially him. And especially with bullies, as another mom posted. And all this was a lot tougher in that he was born in 1969 - they had no idea there were any sorts of problems until he was six and started school. (That was around the time I was born, and Mom says he didn't seem to unsettled by the birth of a sibling as he was totally absorbed in the Watergate hearings.) He has only been correctly diagnosed over the past year or so, we got some pretty wacky diagnoses in the past that just didn't fit.

Okay, so this wasn't really the type of response you were looking for.

My sister in law is a theraputic specialist in the fields of Asperger's and Autism. It was through several long conversations with her that I recognized lifelong traits of my brother's as having an uncanny similarity to Asperger's. Obviously she is a big believer in early intervention, as that is her livelihood. She's had some pretty great sucess with her kids, who range in age from 18 mos to five or so.

If I were in your place, and given my family history, that is certainly a possibility, I would go for as much early intervention as you can get. These kids don't learn social cues from other kids spontaneously, and that sets them up for some pretty cruel stuff in school. But they do interact very well with adults, and a caring teacher giving them help with social cues can set them up for an easier time of it when they hit grade school. We would all give our eyeteeth to have been able to help my brother in this way, but alas...

And unlike diagnoses of ADHD, etc., this doesn't involve pharmaceuticals, just occupational therapy, etc., so I figure if they are wrong about the diagnosis, how much can that type of therapy hurt?

Good luck!

8

I am a clinical social worker, and my recommendation is going to be...GET SERVICES NOW!!! Your child has been diagnosed at an age where he can still thrive socially with help from professionals. Find early intervention services by finding a head start program. You can also contact your school district, and have a CSE meeting on your child now to put services in place now, and prepare him for the schooling he needs. Also, you can check out autism awareness websites in your area to learn about agencies that may be able to help. Don't wait this one out, and find the money if your insurance won't pay. This is the best thing you can do!

9

Hi Tova,
When I taught, I had a student who was just being diagnosed (he was 6). I also have two friends who have boys on the Autistic spectrum.
First of all, your approach and attitude to your son's diagnosis is your best asset in helping him! I highly recommend you start researching your area's services. Parents need to be their children's best advocates - and it can be difficult to break through the red tape to even find out what is an option. Every child is different and there is a huge range of services that may or may not benefit your son and your family. Find out about the options that don't even seem to fit him right now - because the more educated in the system you are the better. And keep learning how policies change and what else is new because as your son grows the services will change.
**Additional comment:
Also continue in depth physical/biological exams. Many children on the spectrum have other biological issues - such as digestion/allergies, eczema, etc. A friend just learned that her son who always watched tv sideways, couldn't maintain eye contact, etc. has double vision. This was found by a neurological optomologist - her regular pediatrician said he had 20/20 vision.

10

I'm by no means an expert, but my little brother has Asperger's (but not a "serious" case). In school, he was teased by the other boys - he wasn't really coordinated enough to run and play games with them, so he was picked on a lot. We attended a VERY small elementary school in Eastern Wa. (his class of third graders had only about 8 students, which was then combined with other levels under one teacher, with different lesson plans.) He THRIVED. He was at the top of his class. We moved across the state where he was put into an elementary school and was one of a class of 30. Suddenly, school counselors were talking about ADD, possible behaviour problems, prescribing drugs...he was at the bottom of his class. he was simply UNABLE to focus with so many people and things going on around him.

My mother tried homeschooling, and that went well, but eventually bowed to pressure from her own family and set out to find a "normal school" for him to attend.

My parents moved him to a private school that, crazily enough, was started by a mother with a son who also had Aspergers. The classes were small, the teachers were patient, and the lessons moved just about as fast as the class of 5-10 students could handle. Again, he was thriving and graduated with good grades at the end of high school.

He attended a smaller, private university, instead of the class-of-300 University. He recently graduated, again, with good grades and now is working as an Engineer in a respected firm.

That's just one story...take it for what it's worth. He's found friends who like him for what he is. He has an amazing sense of humour, he's GREAT at listening. (Sometimes he's simply spaced out, but he can usually talk his way out of that if he gets caught. ;-)) When he reached "dating age", he would carry a small pad of paper and a pencil in his pocket at dances, etc, so he could write down names and descriptions of who he met. He would study those, and look for the girls that had REALLY caught his eye next time. :-)

11

Hi Tova, I don't have a child with Asperger's but I am a great believer in complimentary therapies. You might want to check out the following books.

Mother Warriors: A Nation of Parents Healing Autism Against All Odds by Jenny McCarthy

Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder by Jaquelyn McCandless

Good luck and God bless,
Grace

12

Hi Tova, I can tell you are an amazing mom from your post. I'm sorry to see another poster did not take your question seriously and belittled your request. I have done a ton of reading about autism and have 2 friends with children on the autistic spectrum, one very severe (he's 17) and the other with Aspergers. I've known the severe autistic boy for 11 years. He did not get diagnosed until he was 12, the parents were in denial, I suppose. The one thing they recommend is to get help early. They are firm believers in home schooling (for all 4 of their kids) but actually have their autistic son in a special school part time to help him socialize (he's doing very well), so they also recommend being open to trying different options. They also have specialists and friends come to do different activities with him every day. This has helped him tremendously, along with speech therapy. But the thing that has helped him the most is the extreme love his parents give him, along with the ability to just be himself.

For my friend whose 4 year old was just diagnosed with Aspergers, this was actually first brought to her attention by his preschool teachers as he was home with her until this past year. She is so glad to finally know what's going on with him after lots of testing and has him learning some new social skills with the help of counselors, teachers, and family. He's doing very well! They have found out that he functions better on a gluten free diet as he also is a celiac, which I know diet issues are common in children on the autistic spectrum.

If teachers and others around you know your son has Aspergers, they will learn how to best work with him and also help him to deal with social situations, including bullying which several people have mentioned. Your son will thrive brilliantly, as you say, and now you will learn how to help him with something he must find frustrating and even scary: social situations. Good luck to you!

13

HI! I don't have experience but I do know that if you contact your local school district they can stear you to help. I have heard of "play therapy" groups being used for aspergers. I'm sure there are other options as well.

I had to use the school services several years ago (my daughter was 2yo) for speach therapy for my daughter who is now 7yo and talks a mile a minute! I know it is different case but "therapy" has also helped my friends daughter who is said to be autistic but aspergers was also discussed. I don't remember if she was "diagnosed" with that or not but she is an awesome. amazing kid and everyone loves her! Alberta

14

First, I know it can be very difficult to adjust your life to. My son has Aspergers, Tourettes, and several other acronyms the specialists like to tack on for good measure. He is 16 now and a junior in highschool. He is fully integrated into regular classes with supports if he needs them.

The one advice I'd give you is to be fully involved in every aspect of his education. Do NOT let 'the experts' tell you what's best for your son. Be the advocate for your son to get what you want and stand firm on what you don't want. I wasted 5 years in a childrens mental hospital/school where he picked up bad behavior and was allowed to act out but education was not up to par. I pulled him from that center in the 6th grade and forced our school system to take him as a special education student at the 4th grade level. He read at college level but if he sat under his desk all day, they were fine with that! NO WAY! They're there to TEACH not babysit!

Until I pushed for what I thought was best for him, they were content to make him dependant on state support for the rest of his life. UNACCEPTABLE. He is now filling out interest cards for different colleges.

Yes, we still have trouble deciphering what is friendly teasing and what is just plain cruel tauntning, but I educate his "friends" when I get a hold of them. They seldom repeat the behavior and soon learn to overlook his differences to focus on his similarities. Don't be afraid to open people's minds to acceptance of people with differences. Be vocal about fair treatment for all regardless of quirks or poor social skills. He's an adult in training...they all grow up.

Most importantly, steele your heart for all the struggles he'll face. It's hard to watch your kids get hurt and taken advantage of, but even more so when they have special needs. Have high expectations and strive to reach goals, but if they don't reach them, acknowledge you've brought them farther than they would have gotten if your goals were lower. Many people told me my son wouldn't graduate - we're looking at colleges! People told me I'd support him all his life and he'd never get out on his own - he has a work permit and has filled out many applications and had two interviews! Never let others limit your son's potential or limit your dreams for your son's future.

Support groups are good but only if the others are advocating for their kids, too. Some just whine about their struggles but do nothing to change their situation. Many of my support group people were the very people who told me not to put such high expectations on my son. They told me not to push my son so hard. He has problems. He'll only get so far and I need to realize that. BUNK. I pushed and pulled and often dragged him kicking and screaming through every obstacle. I wanted to quit, give up, concede they were right, but my son means more to me than my struggle to make a future possible for him. Now I'm seeing the payoff. He's going to make it to college, he plays piano, he speaks French, he has girls calling our house (grrrr), he's independant. I've given him a chance at a 'normal' future because I wouldn't settle for less.

I've gone on long enough and I'm sure many others have advice, too. Bottom line is YOU have to decide what's best for your son's future. He's an adult in training...they all grow up.

15

I compliment you on not being devastated. He's your son - he's no different - he just has more access to services that may help him now! I read through most of the posts. I am a speech therapist and have said for years - there is a fine line between genius and asperger's. Yes - labels may be used too much - and chances are - there are more people out there that we see as 'quirky' - but still nice and pleasant as well as successful! As for Nan D - I've thought the same things about Bill Gates and others like him!! But - coming from a speech therapy standpoint - in response to the mom who said buck the system and push for your son - the experts don't know everything and may put your son into the box that fits best.......RIGHT ON!!!!!!! In this field - many therapists/teachers think they know best (you may know that already from personal experience!!). You know your son better than we ever will. Now - we may know a diagnosis and treatment methods - but if it's not working for you and your family - voice that. Take advice into account - but you are your son's best advocate. There is one family that will always stand out in my mind - their daughter has autism - they had 2 other children - but they didn't have 2 sons and a child with autism. They had 3 kids - they were wonderful in some ways and drove them crazy in others. It didn't matter one had a disability - they were one family and it sounds like you are well on your way to that with your mindset and openness. Good luck!

16

Hi Tova,
Like the other responses, I commend you for reaching out for advice and for accepting your son's condition. I am a special education teacher who is expecting for the first time! I have worked w/ many children on the autistic spectrum including Asperger's syndrome. My recommendation is, like someone mentioned before, is to seek out early intervention from your state and local agencies. I am a firm believer in it and I have seen progress in many students that have done it. Your son will be evaluated to see if he qualifies for services. If he does, they will find a program or provide services at your home according to his needs. I know that if services (speech therapy, occupational therapy, counseling, play therapy,etc.) are provided at your home, it is done on a pay scale according to what you qualify for. THe programs outside your home are usually free. Remember, you have rights and you are your son's BEST ADVOCATE!! If your school district doesn't have an early intervention program, they have to find one that will and provide transportation! Hope this helps and good luck! DOn't be intimidated by what people say. Your son is probably such a smart little boy that just needs a guidance in the social dept. He is very special & make sure you challenge him!

17

I think it is great that you have such a positive attitude towards this diagnosis. I just wanted to say that i have taught many students with asperger's and they were awesome students and had very fun, dry, whitty, senses of humor. They were often my favorite students. I taught 8th grade and they interacted with the other kids well just differently.

18

Hi Tova,
I'm so sorry you're going through this. I do not have first-hand experience, and I know what I'm about to say is not the same...but, it could lead you on a new path.

My husband and I have read up on autism quite a bit. My uncle was born mentally handicapped. That and today's autism concerns, led me to look into it. Again, I know asperbergers is not autism.

But, I found a lot of information about there about how diet can greatly affect a child's mental capacity/abilities, etc. Jenny McCarthy has been a very strong, loud voice due to learning about and helping her own son through autism.

She has a website, where you can learn more. I hope that helps!
www.generationrescue.org

19

My son was diagnosed at age 2 with PDD-NOS, which is also an autism spectrum disorder. He had some of the characteristics of autism, but not all, and some with mild severity. In any case, early intervention is the key. And EI in NYC is wonderful. We had a great home based program when he was younger, and then he transitioned to a mainstream preschool with support. He's 8 now, and he goes to a school for children on the spectrum since the other options just didn't work for us. (Too many kids in the class, or not enough support, etc.)

But early diagnosis and intervention is really the best thing you can do. And in NYC there are so many resources to choose from, including soccer, swimming, and all sort of other things aimed at special needs kids, that have extra staff and take into account the emotional needs of the participants. (And the parents!)

Good luck!

20

Hi Tova,
Congratulations to you for such a great attitude. Aspberger's is something that is surprisingly common and there are many ways to work with a child with this syndrome. What you may want to do is get plenty of good information about the how's and why's of Aspbergers and yes, I definitely think you should notify his school. Teachers and staff can prepare much better when they know what to expect, and they won't (hopefully) put unfair expectations on your son. They can also plan academic and social interventions if needed. You can also request educational testing so that by law he will be provided the services he needs in order to succeed in school, whether it is extended testing time, having tests read to him or other modifications. If you feel you would like and benefit from a second medical opinion, you owe it to your self and your family to get one. This diagnosis, as you know, is not the end of the world and he is still your child and of course you still love him and want the best for him. Just be proactive in his education and socialization and he and your family will be fine. I know quite a few successful adults with Aspberger's. You may even want to seek out some in your area to talk with about their experiences growing up. Best wishes to you and your family.