I STILL don't understand!??

Mandy - posted on 06/02/2010 ( 16 moms have responded )

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I just dont understand what Asperger's IS. Okay...my three year old son has it (I SERIOUSLY don't understand how the Dr can tell so early, but he has). I understand that we can not go out in public, unless NO-ONE is there. He can NOT be around people in the store,park, ANYWHERE. He doesn't talk much, he has the speech of a one year old, and has major tantrums, is VERY sensitive to things (among many other little quirks). I am trying to do things his way(but is HARD since I also have a 2 yr old), but I just dont understand what is "wrong with him", as the lady at Wal-Mart said. What exactly is ASD? How can I explain it to ppl when he has a meltdown and starts breaking things and hitting? How is he going to cope at school? He cant even handle being at the libray for playdates. Any thoughts, hints, ANYTHING is helpful.

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Sheila - posted on 06/02/2010

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Hi Mandy,

Honestly, this sounds more like autism...which is like a first cousin to Aspberger's. I say this because typically a child with Aspberger's is characterized as sounding like "a little professor." They tend to have advanced verbal skills but severely impaired social skills. This is another discussion, and probably up for debate.

Okay....I can sometimes sound clinical..I have a six year old living with autism, and I have been teaching twenty years. Many of those years, before my son was diagnosed, was spent teaching children with higher needs.

ASD is Autism Spectrum Disorder. It is a spectrum disorder because people impacted with ASD can go from severely impacted (non-verbal, self-injurious, not toilet trained) to brilliant beyond typical standards (Temple Grandin is probably the most famous of individuals confirmed with autism).

Within the spectrum you get diagnosed usually:
a) autism
b) Aspberger's syndrome
c) PDD (pervasive developmental disorder)
d) PDD-NOS (pervasive developmental disorder not otherwise specified)
e) Fragile X syndrome
f) Retts syndrome

The last two a doctor is able to prove through blood tests (I believe) a disorder that has a direct link to autism..but as far as I know, that is it for discovering through a blood test)

So, what is wrong?

Your child has a neurologically based disorder. His brain is perfectly healthy, but it is different from a "typical person." You will hear people speak of their neuro-typical child meaning not on the spectrum.

I once had a person say think of your brain like a filing cabinet. Someone asks you a question, lightning fast you pull the answer from your "filing cabinet." In the brain of a person with ASD, it is like someone came and dumped the filing cabinet, and then quickly stuffed everything back in...so, the information is all there, but the filing system has been messed with. Depending on how messed up the files, that's how severe the autism is.

So, more scientifically speaking, your child's neuro-pathways do not function typically. His brain processes incoming information differently, and becomes easily overwhelmed. Once overwhelmed, your child's brain goes into overload (think of an electrical short-circuit..and the lights in your house begin to fritz on and off) and he acts out. Autism spectrum disorders impact communication and socialization skills. It is not a BEHAVIOUR problem...it is not the result of poor parenting...it is a neurologically based disorder, He does not CHOOSE this...his brain is in complete meltdown mode and unlike a typical child he does not have the ability to end the meltdown without intervention...or until exhaustion sets in...it runs its course. My son's therapist once said to me his anxiety level is the equivalent to this: think of yourself, at midnight, in an underground parking lot. You think you are alone, and then you hear a second set of footsteps, running, coming closer to you...think of your anxiety level and that is what your child is living with every time you break routine, go somewhere new, or the music is too loud, or the lights are too bright. I have often said that my son is my hero because the courage he needs to leave our house, to face his day, is beyond anything I can comprehend. He works so hard to accomplish his daily tasks...it is heroic.

What can you do?

Essentially, your son's filing cabinet needs a professional organizer to come in and restore order as much as possible. Typically you will meet with an occupational therapist who will help you develop strategies for coping with your child's disorder. You might seek out ABA therapy..applied behavioural analysis. This therapy builds skills through incremental steps. Goal is decided, strategies put in place, and then the therapist works toward that goal.

As well, you might want to work with a speech and language pathologist to help develop communication skills.

Others will suggest a DAN doctor (defeat autism now) and bio-medical techniques (specialized diets). We have done the traditional behaviour therapies and Occupational therapist route and we have had tremendous success.


School

I don't know where you are writing from, but it seems from what I have read if you are in the States, your biggest source of support will come from your school district. Contact them.

If in Ontario, Canada...pre-school services through community and social services.

When he is of school age, you will need an IEP (individual education plan) and hopefully your school will be supportive. He might need an educational assistant or a para.

To help your son, you need to impose structure for him. So, use FIRST/THEN lange. First we go to the car/then we drive to the grocery store. Keep it simple and specific. First we get out of the car/then we get the cart. It sounds artificial, but when your child KNOWS what to expect, he copes better.

To encourage language development, start using pictures. Take pictures of items that he might want to ask you for (foods, toys, dvds, books) What book do you want to eat? Show him a picture of his two choices (apple or banana) Get him to touch the picture of the food he wants, then encourage him to make the first sounds.

If he is sensitive to light, noices, materials (tags) getting hands messy, creams, water on face,...etc He might have sensory issues and an OT is invaluable in figuring this out and creating what is called a sensory diet to help him deal with sensory processing. Again, sensory issues come from the brain not processing sensory information properly....like, for my son, when getting a hair cut the tiny hairs falling onto his skin felt like the equivalent of spiders crawling all over.

If someone again asks, what's wrong with him, be blunt and just say, he has autism (even if it is aspberger's, it is close enough to say autism and most people now seem to have an idea of what autism is). Don't apologize for it....it is not your fault, and it is not your son's fault.

Find a local autism support chapter, and make connections to those that can help you navigate this world.

Good luck,

Sheila

Kerry - posted on 06/09/2010

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See an occupational therapist to help you get him to participate in the outside world. but it should be baby steps. With an autistic you will probably have to repeat the steps for an outing instruction EVERY time you need to go to the store. They will remember the instructions but cannot really manage to apply them each time you go out or across every outing, Its quite possible that it flew right out of the "filing cabinet" when it was used the last time.



one of the challenges i had to face was the whole toilet idea, we had to repeat each step from basic open the door, through to wash hands 34hundred million billion times, before my son got it, *and even at 22 yo(autism) he still has shocking aim and makes puddles!



My daughter 15 yo (Aspergers) screamed blue murder every time i took her into one particualr shopping centre, a friend suggested that i keep a record of her screeches and where we were, what she had eaten, what else was going on there, what clothing she was wearing etc, so i could look for a pattern. The only pattern was the shopping centre. so i went to the centre alone and just sat and looked and listened. It turned out that it was the lighting mostly, with the echo in this centre also frustrating her.



The autistic seems to hear a lot more levels of sounds than we do, or they cant tune out noises like we do. The sound of crickets chirping can be like the volume of a harley davidson at full throttle! right next to their head., If i could not get out of going to that particular centre with my daughter I put an Mp3 player with nice comfy ear phones on her, AND her sunglasses or a floppy hat and tried to avoid her lying down looking at the ceilings. Lambswool laying on her tummy, or sitting in trolleys. :)



So keep a diary of things that seem to be happening when your son loses it, and get to therapists who can help you to adjust your daily routines to least upset your son, because part of your aim is to not let him isolate himself all of the time. Perhaps if you try sheilas picture cards for main words of a toddler, he may not be so frustrated when you cant understand what his scream is trying to say to you. (there is at least one movie involving an autistic boy that shows this method and there has been much success,



try this link the story from Donna Williams who has autism is a great starting point for you to understand some of the challenges. http://www.donnawilliams.net/notthinking...



my tip is to remember to never lie to your child. If you say you will do something in 5 mins, they are like a little alarm clock and will meltdown if it takes you 5 mins 20 seconds to do it, they seem to have this inbuilt alarm clock that will catch you esp on time (to them it is lying if you dont do exactly what you say) # after a lot of years with 3 autistic children of my own I learned to say " we will go for a drive when i have done this job, this job and this job" and as they got older i added "if you would like to go quicker why dont you go and do this job for mummy so it takes less time for me to be ready" . I had some degree of success, and the kids would either wait for me to complete my list of chores, or get in and help with less nagging "you promised we would go and ......"

good luck, find some specialists to help and early intervention clinics.



With my son 22 and still at home, I just tell new people to our house that "my son does not like people and may appear rude, please don t be offended if he doesn t speak to you or answer, he likes to be by himself. he is autistic, so most things social are a big challenge"

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Andrea - posted on 01/03/2012

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For children under the age of 3.. The Birth to 3 program IS a federally funded program and you DO NOT have to have a Dr.'s referral. You CAN personally refer your own child by contacting the office in your area and simply saying you want to refer your child for a speech and developmental assessment. My son received speech, developmental and occupational therapy through this agency until he was three and then they went above and beyond and attended all the assessments and mediated the meetings along side me with the school system to form an IEP and get him into Pre-K as soon as he turned three. He's now in his first full year of Pre-K and has made good process..his speech is still way behind, still tantrums but has done extremely well with a picture chart to help him understand what he's suppose to be doing while there. I was somewhat prepared this time around since my oldest son (almost 18) wasn't diagnosed an Aspie until he was 15, so I am able to stay on top off Jacobi's situation. Aspie/Autistic children can be a challenge, coupled with many road blocks and frustrations.. but you ARE your child's best advocate, don't ever stop searching, be persistent with medical providers, counselors and school systems to ensure your child receives the best of treatment, placement and understanding by others. Also, a psychologist is beneficial as well for "play therapy" ours gets regular updates from his school, speech therapist and his occupational therapist as well and try's to work along the same lines as they do.. All working towards one goal..reducing tantrums, increasing communication, smoother transitioning and a more social little man

Jane - posted on 06/22/2010

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I'm a parent advocate. If you want or need help, let me know. I'm here for you.

Our kids miss the social cues (eg can't read body language or tone of voice) and they take things very literally. They need to be taught these things. You can help by doing things like "Show me your angry face. this is my angry face" or showing him pictures and asking him how people feel.

At age 3, there's loads of possibilities for him to improve. 2 years ago, the valedictorian in our high school was a child with Asperger's.

There's also a great book called, "This Is Asperger's Syndrome", written at a child's level, that will help your son and his peers and siblings understand it.

Again, let me know if I can help with anything. My eldest Aspie just graduated high school, and is now working as a PCA and going to college in the fall.

Alicia - posted on 06/21/2010

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First, if he has speech delays aspergers probably isn't the correct diagnosis. One of the diagnostic criteria for aspergers is typicaly developing speech. This is why so many aspie kids aren't diagnosed until they are older. Classic autism may be more accurate. Have you had him evaluated by a specialist or just his pediatrition? I would find a pediatric nuerologist or developmental pediatrician to give him a full diagnosis if you haven't already and or ask why he was given an aspergers dx when his speech is significantly delayed.

As far as being too young for a diagnosis three is an appropriate age. Actually my son was diagnosed at 2 and it was very accurate. I know it probably isn't what you want to hear as if that is too young maybe it isn't correct. The good news is it is a blessing he was diangosed this young. The earlier you can get him therapy the more effective it will be. The brain is still developing neuro connections until age 5 or 6 so getting him help now can actually help him develop neuropathways that are more typical. He will also have plenty of time to get ready for school so he'll do better when he gets to that point.
Here in the US children with ASD can start recieving services through the school distirict at two or three years old depending on your location. Some districts have an autism specialist on staff and autism specific classrooms. Other place their ASD kids in mixed ECSE or early childhood special education classrooms. Contact your school district (just calling your local school will get you started. They will direct you to the oppropriate staff for evaluation of services needed) to set this in motion. They will probably want to reevaluate him to determine what they can and will do to help him. Once this step is taken they will develop what is called an IEP or individual education plan. Some places have different names for it but the basic function is to establish a plan of action for the coming year. The IEP is rewritten each year to adjust for his skill level and changing needs. Every child is entitled to a free and appropriate education according to federal law so he cannot be denied services even at his age. An appropriate education for an ASD kiddo starts at that age. One thing I will tell you about this process is don't sign the IEP until you are sure it addresses all his needs because once it is signed they are not required to alter it until the following year. Part of an appropriate education is any additional services needed to facilitate learning. There should be a speech pathologist and in most cases an occupational therapist involved in his eduaction and by extension his IEP.

Read up on autism prior to signing anything so you will be better prepared to decide if the IEP addresses his needs. You will probably have plenty of time to do this. Here is lesson number two, everything to do with autism services takes an extremely long time to set in motion. We are talking months and sometimes years depending on the services you are seeking. If you learn about a type of therapy which might be beneficial look into it without delay and get his name on the service providers waiting list. You may decide eventally that something else is a better fit. But atleast he will be in line already if you do want to proceed with it. ABA providers are notorious for having long waits. This is a form of intensive therapy which has shown measurable success and is therefore in high demand. In most areas the supply doesn't meet that demand hence the long waits. Some kids age out before they get to the top of the list. It is one of those therapies that is most effective while the nueropathways are still forming so most centers wont begin therapy with children 5 or older.

There are a lot of different options for types of therapy available. several have already been mentioned. I will echoe Sheila in saying occupational therapy is HUGE. It's probably the most important piece at least initialy.

There are books available that will outline the other options more specifically. There are also some excellent websites. Autism speaks is a good resource. I believe they are the orginization that provides the first 100 days kit. Some of the other moms help me out with this one. I didn't know about it till way after Liam's diagnosis but have heard other moms on this site singing it's praises as a resource to get you started. Just google first 100 days /autism. There are just a ton of books available too. I really enjoyed reading books by Temple Grandin initialy in addition to those written by profesionals. She is a high functioning brilliant successful autistic woman. It was such an eye opening and comforting step hearing about how a person who lives with this experiences life and environment and does more than just survive.

The other resource I can suggest is your county child and family services. With a diagnosis of a disability there are services available to children, some based on financial need and others on the diagnosis itself. We take advantage of a program called TEFRA which allows us to access medical assistance by paying a parental fee - the equivilant of an insurance premium. In some states this isn't necesary as private insurance is required to cover autism services. In others, like MN, the legislators are draggin their friggin feet making this happen. But in MN and possibly other states as well, not sure about this but your county case worker could tell you what's available, MA does cover types of therapies your insurance plan wont.

Above all utilize every resource available that you think might be helpful. Every kiddo on the spectrum is their own person. What works for one child may not be the best option for another. Trial and error will help you find what works for your son. That's why I suggested getting his name on as many waiting lists as you can so those options are available without delaying several months in between them.

Take a deep breath and know you can and will get through this and so will he. There is a lot of support out there not just for your son but for you too. Just seek it out. Remember to take care of yourself while you're taking care of him. You'll be a more effective parent if you aren't stretched beyond your limit.

Good luck and know you are not alone.
Alicia

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You need to take care of yourself, first of all. Don't forget that somewhere between two precious toddlers is a MOM. It looks like some definitions and help has come from this site. There are many sources of help. Libraries have tons of books. You need to hire a qualified person to take care of your son so you can go out some with your two year old. Not easy to find or afford-- I am on like our fourth person in 10 years. Two have been wonderful, one a nightmare and one just okay.

Your son is three and qualifies for early intervention and preschool NOW. I suggest you check it out and use it. The preschool program will help you learn how to help him deal with sensory issues. Also a behavioral specialist needs to be brought in. If you are having so many problems just going out---perhaps them coming to your home to help get things started will help.

There are strategies and programs to help. It takes work and dedication- but so does parenting any child. I'd contact your local early intervention program immediately. Good luck and keep us up to date.

Ilene - posted on 06/19/2010

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@Melissa -- I LOVE that analogy -- I've put it on my blog and have it copied/pasted on my desktop so I can refer to it easily whenever it's appropriate. Thanks so much for putting it up here for others to share!!!!!!!!!!

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@ Ilene Hehe, you're using the pizza analogy I posted! Love it, and glad it's helping explain to others. :)

Just to reiterate what some of the others have said, to me it doesn't sound like your son has AS-- it sounds like classic autism. Some people (including doctors) presume that the difference between classic autism and aspergers is a difference in IQ or severity of issues. Not true! The difference is the presence or absence of speech issues. When you say he's not talking much, do you mean that he chooses not to speak a lot or that he doesn't have the ability to? If you live in a place where services are provided for classic autism and not aspergers, take him for a second opinion and do it before he is school-aged.

Ilene - posted on 06/11/2010

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Someone posted this, I think in this group (but not this thread, obviously), but I'm not sure about that. It helped me understand the differences between the different diagnoses on the spectrum. Maybe it will help you too.

Good luck!!!!!

The Autism Pizza
1. The Crust: Lack of Social Interaction (poor eye contact, not sharing interests with you, no pointing/ gesturing)

2. The Sauce: Impaired Communication (possibly no speech, poor conversation skills, repetitive language, echolalia, no make-believe play)

3. The Cheese: Stereotypical Activities & Interests (extreme routine, strong interest in certain things, stimming-- like flapping, atypical play-- like spinning wheels, lining toys up, stacking)

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Asperger's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (pervasive developmental disorder, not otherwise specified).

Sasha - posted on 06/10/2010

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My son is 17 and has just filmed as a feature character for a uk tv show called waking the dead. Your son sounds just like him. People WILL NOT understand. All you can do is tell he has aspergers, that it is like autism only he has the ability to talk ( a bit of an over-simplifiation, but easier than taking a medical dictonary with you. What you do and how you deal with him is a bigger problem. Other people don't have to live your life and are therefore less important.

I only had the one child when Alec was little, and I devoted my entire time and energy to him. constant speach therepy and behaviour modification. Now at 17 very few people know he has a problem at all. At home it is still very hard. He has got into running away lately and lies and steals all the time. Tells people all sorts of stuff and makes out he is abused. The few people who realy know him know it's all his fantasy land where he likes the sympathy, but it has all made me realise one thing. He has been my life, my total life excluding everything else since he was 2. I took nothing for myself, no time,, money, consideration and now i'm run dry and a wreck.

No matter what happens always make sure you honor yourself. Give yourself a break, and don't berate yourself for the difficult days. Keep a diary of the good days to help you get through the bad, but write down somewhere how things are now, and if possible get some video of these meltdowns that happen now so in years to come you have a point to look back on to see how far you have come. If things go well by the time your son is 17 he will be just as obnoxious as any other teenager, then you can join me in this hell storm which i do feel sure is just another stage he will go through.

Jennifer - posted on 06/10/2010

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My son was diagnosed with PDD-NOS when he was 2. I was in the same boat as you- WHAT IS THIS? You can search for a support group in your area or online. I read A LOT to get as much information on it as possible. I also found that he qualified for other services like a medicaid waiver program and social-competence program for kids on the spectrum. Contact your area's health department and see if you can get a referral of where to go to get some help.

With that diagnosis, he qualified for many services: speech, OT, PT, special instruction & counseling. We went full-throttle. The more help your child gets, the more you help him cope the better, in my opinion. I have seen HUGE gains, and my son (who I believe actually has Asperger's) is in a regular 1st grade class. He still gets all the above services, but at a less intense quantity.

It is controversial, but I also brought my son to a DAN! doctor and had him tested for heavy metals, food sensitivities and other stuff. He has benefited TREMENDOUSLY from this. He is feeling so much better that his behavior is better, too. Their behavior is a way of communication. Find out what he is trying to tell you.

Good luck, message me if you want, I'd love to help.

Michelle - posted on 06/10/2010

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ahhh...kerry is soo right, don't ever lie to them...even a little white one...we just need to go into 2 more shops then its time to go home had better not turn into 3 or lookout mum!!!

Angelique - posted on 06/02/2010

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hi...i have a 12 yr old boy who has fragile -x syndrom..which caused his autism,adhd,ppd ...and also in my family i have a cousin who has fragile -x which caused her to have aspergers syndrom...from the diffrences i see between them..though she is much older she just has a really hard time with being out and around people..she way more functional then my son she talks and has finished school and went to school to learn how to be a chef..She can hold conversations and stuff just you cant really tease or play around with her about certain things or she'll cry.my son cant talk but only really in 3 word sentences and he cant tell me about his day...i know how it feels to have people stare and give you that "bad mother"look...he tantrums and hits himself and stomps his feet and hes not little ..hes 12 and 120 pounds 5 foot 3..but i just smile and say "im sorry..he doesnt know any better"hes pushed people on the bus ...he touches people and hugs everyone...lol..i just smile and say.."im sorry...he doesnt know any better...lol"..most people are nice . i dont try to explain i just keep it movin..and when they are nasty i just ignore it...as for schooling,they have to provide him with an iep and get him all the theraphy he needs in a comfortable and structured envirnment and itll get better,,ive had my son in theraphy since he was about 3-4 .early intervention helped alot ...and LOTSS of prayer!..lol unfortunatly there were no play dates..ever...but every child is diffent...my son still doesnt like to play with other kids ..good luck!.

Michelle - posted on 06/02/2010

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tell them he's gifted...lol!!! and that you can't possibly expect someone of their obviously limited intellect to understand...!! the more time you spend observing your boy the more you will learn to recognise specific triggers....and as you learn, so will your other kiddies. just hang in there....its horrid to have to watch them have meltdowns and realise there isn't alot you can do.....sheila's response was really good and she is dead spot on....i have two with aspergers, one diagnosed at 7 and the other at 2....i can't tell you what a difference early intervention makes....just don't take crap lying down....no matter if its some random person in a shopping centre or an alleged 'professional' who thinks they know your boy better than you do....trust me, they are out there!!

Paulette - posted on 06/02/2010

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Hi Mandy



Reading your post sounded just like my 4 year old son who is being assessed at the moment. He too cannot cope with going out of the house and has massive meltdowns and attacks me. I feel the same way as you and just don't know how he is going to be able to go to school next year. We have a Pyschologist appointment in a few weeks so hopefully she will be able to get him used to being around people.



I am so sorry I don't really have any useful suggestions. My thoughts are with you and I completely understand how hard it is as I am barely hanging on at the moment. I also have 2 other children one 6 already diagnosed with an ASD and the other one nearly 2 who is being monitored as she is showing alot of ASD traits. Every new day just seems to bring my 3 children more heartache, misery and meltdowns and everywhere I go people are always staring at me because I am the one carrying or dragging one child along kicking and screaming.



One of the most horrible parts of everyday is trying to drop off or pick up my eldest child from school because this is something my 2 younger children don't cope with and it triggers meltdowns nearly everyday. Most of the time I just don't bother trying to explain ASD to strangers as I can't even get family and friends to really understand. I guess it is something you have to live with everyday to be able to see the difference between a typical tantrum and an ASD meltdown.



Good luck

Paulette

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