Autism/Asperger's

I have a son with Aspergers syndrome, he is now 21 and in Junior College. I would be happy to answer any questions you may have, and if you are interested I can provide you with a list of resource material.

Sorry this is outrageously long.. but wanted to explain.

My daughter was just diagnosed with high-functioning autism. We are trying to schedule with a dev. psy. but it’s taking forever. Her neurologist wants her to make the final determination of which it is. We are both suspect of aspergers.

Looking back now, my beautiful, highly intelligent little girl displayed atypical behavior from the first time I put a crayon in her hand at 9MO. She is the only child I have ever seen that could sit for 1/2 hr and do nothing but color and line up crayons (as she got older then she sorted them too). Even at 2yo she sat one time and painted a pumpkin for over an hour .. she sat there in her own little world .. almost in a trance. Her behavior became quite a challenge at a little over a year. She was having a lot of medical issues and we changed her diet to an elimination diet. Her odd behavior minimized and I didn’t push for more of a diagnosis, after all she has always displayed highly intelligent behavior (at 3yo she tested as having a 6yo intelligence level). Recently her symptoms have been exaggerated a great deal and I think the reason is two fold:

First and foremost her diet is directly relational to her symptoms. She was recently hospitalized to remove blockages in her colon. Her dr thinks it was because of a food allergy. At the same time her behavior and odd doings got worse. I’m at a loss on this one – she is already on an elimination diet I don’t even know where to start in eliminating more foods. I am suspect that she may be exposed to some things at school.i.e. play dough contains gluten. To this point I have not restricted her use of it, they also made wheat macaroni art projects. I have read several articles on the association of diet to autism. i.e. 40%of autistic children have food problems/leaky gut and 50% have constipation.

Secondly a month after she turned 3 YO she started a regular preschool for at risk students. She qualified for this program based on her medical challenges – Thank goodness because I don’t think we would have discovered all this so early. When the class started she was one of 3 kids. She did ok, not great but OK. I noticed a lot of things she could do before starting school at a month after her 3rd birthday she couldn’t do i.e. she could memorize entire books and at random pick a page and recite exactly what it said. She could also sing the alphabet in 4 languages. All this and more vanished.

As the class size grew I started seeing more and more troubling behavior. When I would tell her it was time to go to school she would blow up saying she didn’t want to go. At first I dismissed it as separation. Then she began to have small melt downs when getting in the car to come home. As the class size grew her aggression grew – mostly to me. Coming home every day included a full blown tantrum (fall on the floor kicking and screaming) at school or she would run from me and the teacher. Her overall behavior escalated – her odd repetitive ritualistic behavior became extreme. Any deviation from a schedule would be met with a tantrum… even as simple as an impromptu trip to the grocery. I tried every popular form of discipline – time out’s, 123 magic, sticker charts, transition charts and so on and so on. If something did help it was temporary and lasted 2 days.

Her teacher AND the school were OF NO HELP. I begged for her to be evaluated over and over again. I have followed every legal requirement and if they do not follow the letter of the law in executing their evaluation on time I will be filing a grievance. I don’t want to sound hard but I’ve had it with thinking they are going to follow the law on their own. I started this in Jan and it’s now May! The problem is that everyone hears her talk for 2 minutes and realizes how smart she is… all I hear is “listen to her she is fine”! The problem is nobody took the time to watch her for more than a minute. So I sat in her class and watched her very closely. SHE WAS AN ENTIRELY DIFFERENT CHILD. She couldn’t play with more than 2 kids at a time or she would remove herself and go into the corner and sing songs and act out seens from her favorite movies. She would panic if any of the kids would violate her space when they were doing projects. She had to sit in the same spot with things lined up. She could not transition from playground to come in so I would take her home as the other kids went outside. SHE HAD NO PROBLEM WITH THAT. IN FACT THANKED ME. Guess what no tantrum! At a time I would expect a tantrum she doesn’t have one.???? She would primarily play with one super bossy girl. She told my daughter exactly what to do and how to do it. I was shocked! I couldn’t even ask her to wash her hands without a major melt down. This is what led me to a neurologist at children’s memorial in Chicago. The dr watched her for 2 hours and low and behold… high-functioning autism. The program she was in for early intervention suggested the same before she turned 3 but she was noting like she is now… besides who wants to think your daughter has the big “A”!

At home we had gotten to the point of several major melt downs every day, potty accidents daily, nightmares every night and at naptime. She would bounce from one thing to the next trip over her own feet all day. She would also run into the street if I didn’t have a clamp hold on her. She once told me “I’m having a hard time concentrating and I’m really clumsy”. The look of terror in her eyes just killed me. She also said “I really want to be good I just can’t” as she was sobbing with arms wrapped around me. I really believe her.

At school the class had grown to 10 kids and I noticed she removed herself more and more. I noticed some aggression to the other kids – nothing outrageous (like the things she did to me) but hitting them with things and pushing them.

We decided to pull her out of class until the proper evaluation and arrangements can be made to support her. After a week of being out she is much more relaxed and the nightmares, accidents and most of the tantrums have vanished. She so badly wants to go back but I know what will happen. She needs support I can’t just throw her back in there. She really wants to be social she just doesn’t know how.

I’ve done a lot of really quick research on what her needs are. I’ve been working on some socialization here at home i.e. flash cards with kid’s faces, cutting out pictures of people in magazines and guessing what is happening to them. Much to my surprise my brilliant little girl that picks things up in a second didn’t want to do those things .. she really struggles with them. She asks me strange questions like if someone is laughing are they being mean. She also has problems with playing with other kids if they get in her space. i.e. we were in a waiting room where there were kids toys. She went to sit at a table with a boy. She just sat there looking at the toys and would not play. After he left she played. She said she was afraid he would interrupt her and mess things up.

So I am looking for ways to help my daughter at home. Everything I read says early intervention is the key. I’m not getting it from the school – my feeling is that they only have autistic program for non verbal below or average IQ. This environment would not be in the best interests of my daughter. It looks like I’m going to have to fight them more but I’m not wasting the time here. I’ve looked into ABA and RDI. RDI interests me because it’s more socialization and that is where she is lacking … the problem it’s about 2,000 to get started… ouch. I need ideas how to help her. Our local Easter Seals offers a lot of excellent summer programs but again $$$.

Any help you can offer is greatly appreciated.

Hi CMDH,
In relation to diet, I would just like to mention something called Omega3, which is Fatty Acid found in Fish Oil.
It is what is called a ‘long chain fatty acid’, which plays a major role in the Brain.
If you do a search on the Web, you’ll find plenty of research that shows that Omega3 is effective in addressing many behaviour problems.
It also has a significant anti-inflammatory effect as well.
You mentioned your daughters ‘digestive tract’ problems, which is a common element of Autism.
Recent research has identified that Autism is associated with a problem with the ‘auto-immune’ system, which causes a chronic ongoing state of Inflammation.
This inflammation is often very evident in the digestive tract, which is how it can be misinterpreted as an Allergy.
Though more importantly, very recent research has identified that the Autistic Brain remains in a chronic life-long state of inflammation as well.
Where this inflammation disrupts both the growth and functioning of the brain.
Which is where the anti-inflammatory effect of Omega3 is very beneficial.

So perhaps you might like to try either some Cod Liver Oil capsules, or Omega3 capsules which you can get from a health food store or supermarket.
Where a change is generally observed within 2 weeks.
I would mention that they need to be taken with a meal.

If you like, I could email you some articles about it.
You might also like to have a look at the helpwithautism.com website as well?
I hope that this may be helpful for you and your daughter.
Geoff.

My daughter has been taking cod liver oil since starting her elimination diet. She also takes a mixture of 13 different suppliments/enzymes/probiotics/omgea’s/etc. in a juice “smoothie” drink daily. We had a nutritionist help us put together the mixture.

I am also a huge believer that enzymes and probiotics are essential

I have done some investigation in re to the gut brain connection one of the best articles I found is at:

http://www.autismcanada.org/Research/LearnersEdgeResearchSummaries.pdf

A great book that puts all the pieces in perspective is “Enzymes for autism and other neurological conditions” by Karen DeFelice. I actually bought it BEFORE our daughter was diagnosed Autistic because the symptoms discussed matched our daughters so closely!

There is also a group of doctors that treat based on the gut brain connection called DAN (Defeat Autism Now) drs. They test for metals, yeast, intolerances etc and treat nutritionally. The first one I picked has a wait list for March of 06. The second requires cash payment. I figured it would cost about $5,000 for her first evaluation. This group of drs is exactly what we need but getting that kind of cash is tough…In fact had a lengthy discussion on just this topic yesterday with her ped. Gastral dr. He ABSOUTELY agrees to the association. Our new venture is to try homeopathic (we failed at it once already) and acupuncture with stones vs needles.

My son will be 7 in August and was diagnosed with Asperger’s at 4.5yo. He’s completing his 2nd yr of K and still at a pre-K level for Reading, Writing and Math despite spending 6hrs a week in the resource room. I have an appt with a neuropsychologist to explore testing as I suspect he may have an LD as well.

His classroom teacher has just been a tremendous blessing and I hope that we are as blessed when he goes to 1st grade!

I would be happy to talk with you. Monica