High Functioning Autism

Allison - posted on 03/12/2009 ( 22 moms have responded )

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My five year old son was diagnosed a week ago as having high functioning autism. The peadiatrician we saw was a horror and offered no follow up appointment or help. I am now waiting to see a another specialist in June. This is all so new to me and is all I think about at the moment. I am interested to hear from other parents with children that have high functioning autism.

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Cindy - posted on 03/14/2009

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Hi Allison,



My son was diagnosed with High functioning Autism last year at 5years and 8 months and I felt devestated, still do sometimes. It felt like I lost my son, even though he was the same little boy. As I'm writing this I still want to cry, because I'm just wondering why it had to be him.



He is currently recieving ocupational and speech therapy and I'm homeschooling him in grade 1. He is doing fantastic and I realised that I have really misjudged him, because he is doing so well in his school work. He has already done half of the years mathematics in 3 months and is reading. And his therapists says that he is improving faster than "normal" children and he can even master some things that "normal" children of his age can't do yet. That is the moments that make me feel great and makes me walk a mile of the ground because I'm so proud of him. He is really working and trying hard. His concetration has also improved a lot since we started him the meds that his peadiatrician prescribed. He can now concetrate for one hour and forty minutes, I timed him on Thursday.



As I said I am still devastated but I am beginning to feel blessed because he is such a great boy. Don't let anybody tell you not to feel a sense of loss, because in a way we do lose, but we must just remember they are still the same children and in a way we are gaining something.



Remember there is always hope.



I wish you and youre boy all the best, and thank you for sharing.

Deanna - posted on 03/14/2009

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My son was just diagnosed this past December a month after he turned 4. Until you start seeing the specialist and getting services it is all you think about. How can you not.  There is just so much that is not known to you right now. But I do promise that it gets easier once therapies and seeing the specialist start happening.  Having  a good support system in place for yourself is really important too.  Good luck and message me anytime you need to talk!

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Jennifer - posted on 03/17/2009

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I have a 5 yr old that is considered a high functioning autisic or the more correct diagnose PDD-NOS. Most of these kids have developed language possibily not until later, they make eye contact to an extent, they are affectionate, but there are just some things like the need for consistancy and a highly structures daily life is a necessity. My child does well, but if his daily routine is interrupted he can fall apart completely, he has regressions such as potty accidents and his speech is regressed too. Like going back to baby talk where he is not answering simple questions with the intellegence of a 5 yr old if that makes sense. Most of these kids have a confort "thing" weather it's an object or a movement. William's thing is books, he is can fixate on books, but they also calm him. These kids are pretty "normal" socially, but they are the children that when you see them there is just something different that you just feel like you can not put your finger on. William was first diagnosed at 2, at the time his speech was highly delayed and he parroted us alot. He rarely pointed, and never asked for food, drink, or anything like that. Toilet training was hard because he did not speak or indicate that he needed to go, but don't let anyone tell you that it can't be done until they are a lot older because it can be done, Well I have just went on and on if you have any specific questions just let me know.

Connie - posted on 03/17/2009

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My son was dx in 2005 with PDD-NOS, there are not as many services in the little town that we live in but there are services several hundred miles away from where we live in Abilene, Kansas, It was his pediatrician that actually noticed the symptoms and then we took him to KansasCity to a developemental team of specialist and thus we have our dx. of our now 8 yr old son, he is special ed most of the day at school and has regular ed for music science and social studies and he has occupational therapy and speech therapy during the week also. He is more based on a routine that is the same or close to the same every day but when you have three kids it makes it a little hard to do that all the time, he is able to talk but his sentences come out choppy or out of context. but we do have some behavior issues with him but not everyone does, so take it one step at a time because it is very frustrating and confusing. Connie

Sarah - posted on 03/17/2009

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I know exactily what you are going through. I have been to all the specialists-behavior, nerological, you name it I tried it. It seems like they give you a name and send you on the way and you should know what to do from there. My son was at first said to be high functioning autistc by the Behavioral  Specialist. It started with a serous speech delay, and over reaction to everything. He had a real problem with any kind of change. The past 2 years I have been working closely with the school and an IEP set up for him. We attended Speech therapy at the local hospital University and also through the school.  He has lost the title of Autistic and is doing great in school! He seems to be alittle behind with his reading and writing, but is very advanced in math and arts. It takes a lot of patience and special disopline, but he has almost completely grown out of the tantrums and spastic behavior. I wish you the best! I was completely devistated when they first told me, and all I could think about was will he ever be able to have a conversation with me or be in normal classes at school, so I know how it can consume your thoughts. Best of luck!

Allison - posted on 03/16/2009

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Hi Jennifer, thank you for your message, I will have a look at the web site your suggested. All the best to you and your family :)

Michelle - posted on 03/14/2009

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I have 2 forster boys one is 4 and one is 5 and we are about to adopt and they both have autism and they are high functioning and the best thing you can do is get him in school as soon as possible if he is not already in there both my boys started in sept and they are doing great

Jennifer - posted on 03/14/2009

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My son was officially dx with PDD-NOS in August by a developmental pediatrician and unofficially dx at 18 months with high functioning autism. I know this is all very overwhelming to you. There are great support groups online and a good website is autismspeaks.org.

Diane - posted on 03/14/2009

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I have a pdd/nos high functioning grandson that I am raising and also from NY. He isn't a behavior problem but even so I do agree that you have to be a real advocate for them as the school systems do seem to let them fall through the cracks quite easily. You have to go willing to fight with the schools knowing your child's rights as well as yours. Getting an advocate for your child is a big help in dealing with the schools. Good Luck to everyone

Karen - posted on 03/14/2009

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i have a pdd/adhd child that is very high functioning form of autism he just has behavioral issues but i had problems here in ny when i started to try for help they didnt want anything jsut dont let your child fall throw the cracks be a good advicate for them or the schools well not get them what they need... for example mine was haveing problems and they were sayign he was a bad child and what not i went in there and got him a 1:1 aid and he is great and it was not him it was the other picking on him and the teacher never seen taht part now he has a 1:1 they see the real problems becasue there is someone to watch the situation better and for most autistc childern the smaller the class the better

User - posted on 03/13/2009

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Resources, Education in your area:



http://www.autismqld.com.au



 



Support group in your area:



http://groups.google.com.au/group/autism...



 



It helps a lot to know you are not the only person on this planet dealing with these issues and emotions!



 



Children with high functioning Autism tend to be phenominally intelligent! Two main issues that cause that intelligence to be hidden are sensory integration and social adaptation (lack of). Begin with an Occupational Therapist geared FOR Autism and a good Speech Pathologist. Continue the work at home with your child. Together, you will work wonders!



If possible, pursue diagnosis and follow up progress evaluations through a Developmental Psychologist or Psychiatrist, NOT a Pediatrician or M.D.



My son is 8 now, and I have learned to perceive the entire world differently - because he does! It is a joy and absolutely wonderful to be his mother.



Good luck to you and your family! :)



 

Sue - posted on 03/13/2009

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Hi Allison, my son was diagnosed last year at 5 and a half and there is just so much information out there to get your head around. I first went to CentreLink and got him a health care card which entitles him to lots of things including the possibility of reduced fees for kinder or school depending on their policy. I also looked at what funding was available for him for school and saw a psychologist to help us get that under way as it is quite a long process with deadlines. As it turns out we didn't get funding for my son. I have also found a really good website that has just recently added an Austism section. It is http://raisingchildren.net.au/children_w...
this has a lot of information but is also able to direct you where to go to next. Hope it helps. There is so much more that I could tell you but I would be here all night. Good luck and try to find a good medical team to help your family and remember to give your little man lots of cuddles!

Allison - posted on 03/12/2009

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Thank you Debbie, I will have a look at TACA, that sounds interesting. Just hearing from other mums is helping already. Thank you again.

Debbie - posted on 03/12/2009

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My son was diagnosed with high functioning autism Feb.20/06. He was 4 and a half. There are so many things you can find on the internet as far as research goes. The places I found to be most helpful were TACA Now (talk about curing autism) good stratgies to try and learn about PECS ( picture exchange communication system) I'm not sure what is available to you locally but community living was a great help to me as well as tri-county behavioural services and the geneva centre. Hope this helps. It gets eaiser I promise.

Allison - posted on 03/12/2009

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Hi Tracy, nice to hear from you. I live in Queensland so not near you, but thank you so much for the information that you have shared with me. The doctor that we are waiting to see has a wonderful reputation, so I think that is why it takes so long to see him. I guess I am just getting impatient and want to know everything right now! My son's teacher and teacher aide are wonderful women, so I think he is in very good hands.  I saw the 'horrible' paediatrician as the school needed a diagnosis for my son so that they can provide extra help that he needs. He however did not tell us any information that might help, did not refer us to a psychologist or even book a follow up appointment. He made completely inappropriate comments and I left there bewildered, confused and hurt!  So I hope to never lay eyes on him again! I am looking forward to meeting with the new paediatrician and finally getting some information.



I think it is wonderful how many mothers have responded to my post on here. What a great way to share our stories and offer some support to each other. It is a big comfort to know that we are not alone. I wish only the best to each and every one of you and your precious children.

Allison - posted on 03/12/2009

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Hi Carly, thanks for your message. It is really uplifting to hear of children that are doing so well. Thank you also for telling me that it is ok to cry, get angry etc! I wish you and your family all the best for the future :).

Tracy - posted on 03/12/2009

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Hi Allison,



I to am from Australia, N.S.W. My son was originally diagnosed with aspergers & ADHD when he was 4, so that was 2004. He was rediagnosed last year as having high functioning autism. I have had a wonderful team to work with, family, doctors & his school. I have been very fortunate. His doctor is a wonderful man called Anthony Slowiaczek. He's a child psychiatrist. Jacob is also about to see a paediatric occupational therapist called Anna Behnke. His first appointment is at the end of April to help with his fear of toilets. I'll let you know how that goes if you like. I talked with her for over a half an hour, very good feeling about her! As I said I have been so fortunate & have not had to go through the troubles others have, I feel so deeply for you all! If you are near enough to him I hope this can help. Let me know if you want any more info. Take care

Carly - posted on 03/12/2009

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My son is also a higher functioner. He took Occupational therapy in kindergarten - 2nd grade and then they found no need. He is 14 years old now and is floursihing. He still does speech therapy three times a week. He is in Life Skills down here in Texas. He is learning to cook, good personal hygeine (they brish teeth and do deoderant...and his Axe body spray...LoL...after PE). He has been on a Challenger League t-ball team (a team only for children who have a disability of some kind) and just loves it. He got a gold medal in basketball and in bowling for his age group at the Special olympic trials down here. And he started horseback riding yesterday with a group called SIRE. He just rocks! And he's got a cutie pie girlfriend that he's waiting impatiently to join him in junior high next year. It is NOT ALL BAD!! We are Blessed to be out in the country (kinda) in a school district with awesome resources and a real desire to help these children. Our counselors rock, the teachers rock, even the classroom volunteers are super cool. My son is living a good life and is totally oblivious to the fact he is "disabled". He isn't up to his age/grade level, but has been making enormous strides.

I wish you all the best and my best advice is this: your child needs you to do everything you can to get them everything they need to succeed and do well. Don't be afraid to ask questions, get upset and cry, get angry, or make complaints if your child's special needs are not being met in any way.

Good Luck and God Bless!

Allison - posted on 03/12/2009

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Hi Andrea, thank you for your message. I have spoken to a woman in my area that runs classes at a special education unit at a different school than the one my son attends. We are looking at him having duel enrolment - he will do one to two days a week with the special ed unit and the other days at his regular school. It is wonderful to hear that your son is doing great. Most of the research I have done focuses on the negatives and doesn't say much about positive outcomes and hope. Thanks again :)

Andrea - posted on 03/12/2009

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My son was diagnosed when he was 3. The best thing to get him into is an ECI. Early Child Intervention. They will put him on an IEP. That tells what services he needs. My son started ECI right after he was diagnosed and he went into a reg. Kindergarten class, now he's in 2nd grade class w/a one on one to help him through his day. He is doing great!! 

Allison - posted on 03/12/2009

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Hi Barbara, thank you so much for taking the time to reply to my post. I live in Australia, so some of the info you gave me does not apply here. But I am sure that it would be helpful to someone else who may read this. How are things going with you son at his school? I only became concerned with my sons development last year and then he started what we call prep school in January and as it was such a big change for him he is displaying behaviours that I didn't even know he was capable of. The hardest thing right now is waiting to get some professional help and not knowing what the future holds.  Thank you again for your message ((((hugs)))) back to you.

Barbara - posted on 03/12/2009

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My son was diagnosed with high-functioning autism in july of 2007, just before he turned 3. My pediatrician was kinda loney too, thought there was nothing wrong with me son - maybe a speech delay - boy, he was wrong. Di am not sure where you live, but in NY where i live, it is quite easy to get services, but more when they are younger. Your child, once you see the next specialist, will qualify for all sorts of things, you can also get Medicaide - they will pay for all medicines, DIAPERS if you need (or pull ups), i believe will pay for other services too if you need, but we havent used. You use the medicaide instead of regualr insurance, cuz there is NO co-pays for ANYTHING, and is a HUGE help with all that financial stuff in the long run. You will have to get a medicaide service coordinator, and go thru your school district to the special Education department to work up an IEP (individualized education plan). The medicade service coordinator should be assigned to you, NY was really on top of their game, since people were coming to me, and I didnt really have to seek out help too much. ALSO, once you have that Autism paperwork in hand, you can also, thru your coordinator, get on the OMRDD list, which means he can also qualify for things such as - front of the line at amusement parks instead of waiting, which might be insanely brutal for him to wait for anything, like my son. OMRDD stand for Office of Mental Retardation and Disability. Your son will probably have to be in a different class at school, unless you think the one he is in is working out great, but usually in school there might be a class or two with extra teachers, and therapists that come in and out throughout the day. My son is still in pre-k and gets his speech (5x a week), Physical therapy (1x a week), and Occupational therapy (3x a week) IN CLASS, or they pull him out. But he is in an integrated classroom, with regular kids, and kids like him.... so he can learn good social behaviors from the "regular" kids. Hope this helps you some.....maybe just google the heck out of anything you might want to know, but at least i threw somethings at you that you might not have been told. any questions, just write back,and i'll keep checking up on you! {{{{HUGS}}}}

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