High Functioning Autism...IF You Have or Know Some One That Has Dealt with It

Updated on August 24, 2011
E.B. asks from Tacoma, WA
16 answers

My youngest kiddo has huge Sensory Processing issues. He has been in Occupational and speech therapies for over a year now.

My mom really is tryng to encourage me to have him looked at for the possibility of having a form of High Functioning autism.

There is just so much behavior issues we have tried to address with really strict discipline techniques....And nothing has worked. You can see he is not making the connections needed to correct the behavior. Normally with him once you try and discipline he will get extremely worked up which leads him to get uncontrollably violent.

So if you have or know someone who has a kiddo with High Functioning Autism...what were the signs? How did you get the diagnoses and where did you go from there?

He had the regular Autism screening at his two year check up and I was told he was NOT Autistic. Can that evaluation be wrong? Is this something that can take time Diagnosing?

He had a VERY bad speech delay. When he was first evaluated at his therapy place he was 26 months old. He has thought to have about the verbal skills of a 0-3 month old. And the mental/physical skill of a 9-12 month old.

He has since captured a FULL vocabulary and is working more on corrective Speech needs then using Speech needs.

He also has OK social skills. Like he can play with a group of kids...But will normally end up hurting, freaking out.....scaring off the kiddo's. He can NOT read social Ques. He doesnt get that his actions effect peoples feeling. Like he will chase after his brothers/friends with a bat or something that can hurt if hit with...They naturally RUN from teh situation...Which he reads as...OH THEY WANT TO PLAY!!!! I normally have to throw myself between them and him and I end up the one getting hurt.

He is going to be Tested into the IEP Program through the School District. I am super duper excited about this. He has major OCD's on top of everything and I can only make my life so structured. I am naturally a go with the flow kind of person...and he needs Daily Rigid to the tea everything is the same sort of structure....Me and this dont get along and I make the best outta what I can do.

So if I can go about getting this addressed and Possibly get him on the path to normal....where we are can get along I want to to that for him. I want to him to have a fun time along the way of life...and to get that for him I guess I have to know how to help him....

Please any insight on how to go about this! I am desperate!

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So What Happened?

I have no one that I am close with. My mom works with kids like my son. so she knows everything I am going through and is trying not to TELL me what to do...but at the same time look at for her grandson...So as things get worse with somethings she has started seeding the knowledge i will need to get better help.

Never seen a developmental Pedi. Has seen specialist at his OT and ST place. they did the initail evaluation

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answers from St. Louis on

There are actually quite a few of us on here. Sounds a lot like my Andy. He has seen so many doctors but it was his psychologist that gave the actual diagnosis.

Imagine how you would be if you didn't get any social cues, that is how they are. Social cues are just too abstract for them. So you look at the temper. No matter how pissed we are we know to hold it in or people will be scared, they don't get that.

I am ADD, Andy is PDD NOS, how I explain the difference is I think a lot like Andy, I just have the social skills to know not to articulate those thoughts most of the time. Since they are on the same spectrum that is why it is so difficult to diagnose a high functioning autistic, they look at lot like ADD so you have to look to social skills.

Andy is 12 now and he does get that you must obey social norms. He doesn't see them but he just learned this and that just as a normal person learns a spelling list. I do this they will react this way, I must not do this. The problem comes in when he encounters something new. He has to go to someone else and ask what is going on so he can learn to spot it. It is crazy when you think about it but it does enable him to function on his own. :)

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answers from Portland on

My son has HFA. You may join my face book page K. Madill M. and ask questions there. He is 12, but in a typical class. He was severe at age 2. We helped him with diet changes and understanding his thought process. Behaviors are NOT stopped by being strict. You need to learn the speak his language. Every autistic will have a different language. It can be VERY complicated , but it is possible to learn it:-)

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answers from Lincoln on

My son was evaluated for Autism at 3 and they said he did not have it. At 5 he was diagnosed with a form of Autism (PDDNOS). I can understand SO much b/c he was so hard with all of his OCD issues. Like the way his shoes were put on. Right sock, left sock, right shoe, left shoe. If you did it differently he would take them off and throw a fit. There was the need to go first at EVERYTHING... not just a typical kiddo need, but to a pervasive degree. There was the need for EVERYTHING to be blue, again, to a pervasive level.

One thing that was hard for me was the times when I would have to break his rigidity. His behavioral psychologist encouraged me to do this b/c in the real world not everyone will accommodate this, which she is correct. I would pick my battles and only focus on one thing at a time. He still struggles with the going first the most.

One of the biggest problems was that he had a favorite, to a pervasive level. He had a favorite grocery store, a favorite Mc Donalds, a favorite Wal Mart (despite so many of them looking the same, he knew he difference), a favorite road, etc. He would fall apart when I turned right on red b/c red means STOP.

What saved me was social stories. You can make these yourself on the computer. Heck w even drew some together and he helped me draw the pictures. They don't have to be fancy, but they convey a message in a way the kiddo can understand. There are some rules. 1st, it HAS to be in 1st person. Ie. My name is John, (meaning John is your kiddo) I like this.. I do that... etc. If you try to make it a story about about some other kid, the kid will miss the message and the generalization that it is a problem he is learning to fix.

Here is one I did with my son after he chose a favorite friend out of my friend's 2 kids. He was excluding one and not to be mean, but b/c in his mind the one kid was his favorite:

My name is "Billy". I like to go to Sarah and Joe's house to play. One time I went to play with Sarah and did not allow Joe to play. That made Joe sad (important to convey how it made "Joe" feel). Joe likes swimming and so do I! Joe likes to work on the computer and so do I! (important to convey positive things about Joe) Next time I go to play, I can play with Joe and Sarah. It makes Joe very happy. Now we can all be friends.
We made this story together and drew pictures and it really helped paint a picture of how play time should be and how to include everyone. It was still a struggle but WOW it helped!!!

Feel free to PM me about social stories as I have made a lot of them and they are SO SO helpful with rigid kiddos. I have made them about going to school, standing in line, playing, being embarrassed, etc.

Good luck!!!

5 moms found this helpful


answers from San Diego on

My son is high functioning autistic. We found that using strict discipline methods (such as ABA based) does not work for him in fact it made his stress and tantrums worse. We went the DIR/Floortime method a play-based parent participation method and it has done wonders. Not all kids on the spectrum respond to the same methods. We use a little Teeach method and others as well. Look into it. There is a great you-tube video called "Grahams story" that discusses a parent's struggle and the use of DIR/Floortime. To me, your son's rigidity and low social skills leads me to believe he could be on the spectrum. One more thing to remember, your "normal" may be different than someone else's normal and that's o.k. Best of luck to you and explore other methods that are out there.
Note: Dir/Floortime does have a website ICDL and you should also look into Dr. Stanley Greenspans book.

3 moms found this helpful


answers from Los Angeles on

I work at a school that specializes in learning-disabled kids with sensory issues. Some of them are fine but others have huge social problems and it turns out that social issues often go hand in hand with learning disabilities. We don't accept autistic children and yet some of the kids in here sound like your son so I'd also encourage you to look into the possibility that your son isn't autistic but has cognitive issues.. Look into finding a competent neuropsychologist and see if that might help...good luck~

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answers from Chicago on

My son was diagnosed PDD-NOS at 3 (he is a couple of months from turning 5 now) - he's VERY high functioning so it's hard sometimes to even know if he still fits or not - even at his last appointment the behavioral pediatrician and her team that evaluated him was teeter-tottering on the diagnosis.....My son had a speech delay (chronic ear infections from 9 months on so lack of hearing, etc); developmental delay, and due to both of these factors, in my opinion, led to social issues.
My son will talk back and forth with you but in the middle of conversation if he sees something that catches his eye - he will want to talk about that and only that. If he's in a 'mood' he may not even be interested in talking...period....and just groan at you to leave him alone (seems like me as a teen!!!).
Currently my son is obsessed with airplanes and helicopters, oh and rolly pollies - he'll do other things and will talk about other things but if he starts talking first - it's typically about one of these subjects.
In the past it's been obsessed with how many 'petals' were on a ceiling fan (was intrigued that not all were the same); flushing toilets; on walks would want to walk up to everyone's air conditioner unit to see if it was on or off.....

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answers from Seattle on

There is an evaluation service at UW. My friend took her son to that and through the evaluation he was diagnosed with autism. And from there they were able to get a list of resources for your son. My friends son was just diagnosed in April with Autism but nos specific. He is now in a special pre-school that has small classroom size and teachers that work with him. He also went to an autism camp up in Everett for a week. Send me a person message and I can get you connected with my friend. She has lots of information.

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answers from Portland on

I see that you're in Federal Way, but if you can get in down in Portland at OHSU's CDRC clinic (Child Development & Rehabilitation Center) you should be able to get lots of information and a complete evaluation that could put you on the right path. And I don't say that because you're on the WRONG path - quite the opposite; congrats on being such an attentive and concerned mama!! - but your son is growing and developing and with little kiddos like yours, I believe that evaluations should be about every year. They have a great program that has helped lots of kids, and they can put you in touch with and work with providers who are local to you so that you only need to visit them once or twice a year.

Good luck to you and your son!!!! **Hugs**

1 mom found this helpful


answers from Portland on

You need to look for a support group. Portland Asperger's Network (PAN) includes people from all over Oregon and some areas of Washington. There must be similar groups in WA, too. Some of them have also monthly support meetings, play groups for kids, etc. In terms of evaluation, it's best to have a thorough evaluation from a team of specialists, not just OT and SP but also developmental pediatrician, child psychologist, etc. Autism Clinic at OHSU (Oregon) has very good evaluation team. The sooner you get the correct diagnosis, the sooner you can have the right set of therapies in place that can really make a difference. Best of luck!

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answers from Seattle on

My 6 YO son is high functioning autistic and has mostly sensory and social issues as well as OCD-ness and ADHD. We had him tested almost 2 years ago and at that time they said it was more closely defined as PDD-NOS, which basically is one check box short of autism. They ended up changing the diagnosis to give him better resources i.e. in school (IEP), federally. Socially he doesn't understand personal space and has a hard time reading others. For example, instead of running up and saying, hi my name is J do you want to play?", he might run up to a kid and growl in their face. He also went through a phase of repeating moving lines in excess. He is overly affectionate as well. No aggession issues. He has full vocabulary and seems to be learning almost at average with the help of ADHD medicine (Concerta). The school provides occupational, speech and social therapies, which is great. At this time, we feel he is getting the perfect amount of support. If you need more information, please let me know. I definitely agree with your Mom though....one thing I felt bad about was trying so hard to discipline him and later finding out he had little or no control over his behaviors. Doing a daily routine in the morning and at night has been an amazing help...we laminated pictures and have them in the order we choose...that way he always knows what is next and it helps him manage and not act out.

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answers from Los Angeles on

One of our families best friends, and our daughter's Godmother, has a son on the Autistic spectrum. She has found some great results from a product called K48 Plus. You can listen to what it has done for her son at http://bit.ly/nNUHvg.

Take a listen and message me if you want some more info. Hope this helps everyone out there!

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answers from Stockton on

I agree that it sounds a little like Asperger's. My FIL has it and has the same issues you describe eg. unable to read social cues, temper, obsesses. You may want to research it further and def bring it to the ped. attention so that you can get some proper referrals. Good Luck!

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answers from Tulsa on

My dd has a lot in common with your son. Because my daughter met all benchmarks and was very successful academically, no one took my concerns seriously. Now she is in 4th having tantrums that she never had as a toddler. She does not respond to strict discipline and that is how my husband was raised. It actually caused her to be angry and defiant. It provoked her to be stubborn and not change.
I don't have any answers but you are not alone. It is a real issue and you are a good M. to get your child help. If one is not helpful, ask another.
We opened up to a M. in our town. After I told her how awful I feel and how I don't know where to go for help, she confessed her daughter and several other kids have been getting help already. If only I had opened up to the right people sooner. I feel better knowing I am not the only one and it is not my fault. She gave me the names of professionals who helped her and the other kids. Is there a M. you could trust?

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answers from Pittsburgh on

I have a friend with a son (now 8) that was originally diagnosed with ODD at 5, then diagnosed at 7 with Aspergers.
Your son is luck to have a mom who is *on the ball* and looking out for him at 2.
Talk to your pediatrician.
Has he ever seen a developmental pediatrician?

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answers from Omaha on

I am no expert but you may find a resource at: http://www.starkravingmadmommy.com/

She blogs about her son on the spectrum.

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answers from Sioux City on

Ask your OT for some social stories. Basically you use picture stories instead of words to get your point across. So you could use a picture of a boy with a bat hitting a ball and explain then a happy face. Then a picture of a boy about to hit a child and then a crying face for no. We did a lot of these with my niece and it seemed to work well.

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