My daughter is 23 years old and was not diagnosed until a year ago with autism spectrum disorder. I wonder whether is this an accurate diagnosis. She has spoken since she was three, although she often will reply with only a single word. Her speech can also be unclear and repetitive. She makes some eye contact and she has an amazing imagination. She draws very well and loves to take photos. She can seem very happy at times. She laughs even when there is nothing apparently funny to any one else.
At other times she is very withdrawn and has tantrums where she scratches at her face drawing blood. Last week she slammed the door repeatedly into her head leaving a large bump on the top of her head. She is smart and has an average intelligence. But she cannot hold down a job and spends most of her time by her self reading or doing puzzles. We were worried for a while when she was young that she was deaf because of her refusal to respond to those around her. She would sit in the corner of her room looking at nothing for as long as we let her. If my wife tried to talk or touch her she would throw tantrums.
Obviously my daughter has improved a lot since then. And I do not feel that autism spectrum disorder is the correct diagnosis for her, now or even when she was a child. She has friends for a start. And can write stories and poems on the computer. Even when she does not reply to us it is obvious that she understands. She is smart and has been beating me at strategy games on the computer since the age of ten. She loves to do sudoku and enjoys creating the puzzles with pen and paper. She does have some strange looking behaviour’s such as flapping her hands in front of her face, even when she does not do that she holds her arms and hands in a strange angle like they are broken wings at her sides. She jiggles her legs and will bang at what ever is close to her. She irritates us with the same sentences over and over and will come out with sentences from songs. She ignores the people around her much of the time but if you bring up a topic you know she is interested in you may even get her to have a conversation with you.
She is smart and loving and is capable of showing a great amount of kindness to others. How can such a smart girl who can speak and graduated from high school with passing grades be diagnosed with autism spectrum disorder? I have asked about aspergers syndrome and have been told that my daughter does not meet the criteria. It has been suggested that she has autistic disorder but how is this even possible when she is clearly smart? Surly her intelligence warrants an aspergers diagnosis even if she still has difficulties with communication?
I have been told that she may never have a job, and will require continuing assistance through out her life. But I believe that there is a lot more out there for my daughter.
If she does have autism how is it possible for her to go with out a diagnosis for so long?
My son was diagnosed nearly 2 years ago when he was 6, but I suspected something was different from about the age of 3.
All of the behaviours and strengths and weaknesses I recognise as being on the spectrum. If you could print off your forum post, and then read it again after 2 years after you have read about autism and learnt alot more about the disorder, then you would see that she does fit the criteria.
The reason she has been given a diagnosis of autistic spectrum disorder and not aspergers is because she has a speech disorder and maybe echolalic. Those with Aspergers tend not to have any speech disorder. Some may have some delays. However they all tend to have problems with processing language and have literal interpretation, concrete thinking etc.
If you google 'autism and delayed echolalia', and see if that is what your daughter does with repeating words, phrases, things from TV/DVDs or things other people have said, or noises she has heard or songs/TV jingles etc. My son also does this. This all demonstrates that she has learnt language differently and will have lifelong differences and difficulties with language. For example she maybe able to express herself clearly, but not may understand what is being said to her to the same degree. For other autistics it is the opposite, they cannot talk or express themselves, but they can understand what is being said to them. However both of these are speech disorders which fall under autism.
A diagnosis of autism, does not automatically mean low IQ. When those on the spectrum are assessed using non-verbal methods they are usually at least of average intelligence. For example, if you were assessed for your intelligence in French, and you don't speak or understand French you wouldn't get a very high score would you?
It is also not true that those on the spectrum cannot express emotion, or have friends, or a sense of humour, or imagination etc. Many do, especially those at the higher functioning end. What is usually characteristic is that they do well in some areas and really struggle in others. So in the area of social interaction they may be able to talk and make friends, but may take things literally and not understand some types of humour or teasing. They may be very black and white thinkers and appear inflexible.
Your daughter is not the only person to have made it through the education system and into adulthood, only to get a diagnosis as an adult.
What to do now though?
I would suggest you read a couple of good books about autism/aspergers to help you get a better understanding of what it involves and how it affects your daughter. In actual fact you do have a very good understanding of 'how your daughter is', but presently you don't see the 'autism in it'. You could read a book by someone like Tony Atwood. Although he mainly talks about aspergers, your daughter is obviously high functioning and therefore alot of it will be relevant.
As she has sensory issues (Sensory Integration Disorder?), then I would recommend a book by Olga Bogdashina called Sensory and Perceptual Differences in Autism and Aspegers. This books is very good at showing you how they actually experience their world differently to us and helps you see where their behaviour comes from. For example, an autistic child had great difficulty keeping his clothes on. At every opportunity he would take them off and it was becoming distressing for his parents when he did this in public places. So they were advised to reward him with a chocolate biscuit if he managed to keep his clothes on. However, he is obviously tactile sensitive. His sense of touch is hyperactive and he is trying to remove his clothes because they are hurting him! To offer him a biscuit is like us being offered a biscuit if we can keep our hands still whilst someone pours boiling water over them. It is ridiculous! How as that child 'cured' of this autistic behaviour. His parents removed all the tags from his clothes. They only bought clothes made of soft material. He wore clothes like jogging bottoms and sweatshirts instead of trousers, shirts, jumpers etc. They bought seamless socks and he wore trainers. Problem solved. No more taking his clothes off. When you understand that they are actually feeling pain, then you see that their behaviour is not crazy or illogical. It is a natural reaction to what they are feeling.
Can you let us know what country you are posting from, so that others can give more specific advice.
Finally, if you look around this forum you will see that there are a number of people with autistic spectrum disorders posting and advising parents with children on this disorder.
If MJIthewriter posts a response, you should really read her response.
There is a whole wide spectrum for autism. There's typical autism, aspergers, and PDD-NOS. People who are very smart can also have autism and not aspergers. Ask MJIthewriter. Or her parents. Her parents often brag she graduated top of her high school class and went to art school in college for awhile. She also posts some amazing responses on many forums.
My daughter was diagnosed PDD (part of the spectrum, they are guessing PDD-NOS but she is too early to pick which one). She is immensely intelligent for the age of 3. I'm not saying it because she's my daughter, but because the developmental pediatrician who diagnosed her went over all the things she was entirely ahead on doing. She's doing puzzles that a 4 or 5 year old would do (she just turned 3). She's starting to read when she can barely talk. Oh, and she is social. She is so social. But she does not understand social cueing, so although she wants to be friends with everybody, she has difficulty. When she qualified for developmental preschool, the definition about social communication and social interaction for autism said that there could be either a lack of or a difference in interaction. Our daughter definitely doesn't lack it, she's just different. She has her sensory issues and her meltdowns. She has ritualistic behavior that causes meltdowns if she can't do it.
So, I guess if your daughter has a diagnosis... maybe it is accurate... maybe it's not entirely accurate (I think there is a rush to jump to autism diagnosis over other ones and they are broadening the definition to include more people). I probably could get an aspergers diagnosis myself, but I think the sensory integration disorder diagnosis is probably the most accurate (I also have ADD and OCD). My husband also exhibits asperger traits, though not too many. We can both hold jobs, make friends, and function fine enough in life. I think we also seem to help each other out. I am not sure if I'd function as well without him. So, for us, having a diagnosis of that wouldn't really do much. I am interested in looking into sensory integration therapy for myself. Seeing how it's helped my daughter... I am feeling a little jealous it wasn't available when I was growing up.
I can understand your frustration as a parent. You want your daughter to succeed in life and live on her own and do everything that everyone else does. Anyways, you should open a dialogue with your daughter if it's not too upsetting for her. Read up about various things. Do not read the stupid Jenny McCarthy book about autism. And there are lots of websites. I looked them all up about a year ago, and I can't remember them off the top of my head. Maybe some other people can recommend sites?
For finding jobs, colleges seem to have a lot of opportunities for jobs that you don't have to interact with people as much. Database management or database entry, library work (shelving is a good entry position you just need a high school diploma for), some administrative work that requires filing or typing or research type things. Anyways, figuring out what are good job fits is hard. IT takes a long time. It might take failing at jobs and getting fired. Or getting transferred. having enough self-confidence to pick yourself up and not be discouraged is hard. I've been there. Many people have. I have a lot of sensory issues that affect what type of work I can have. I found technical editing, layout editing, database management, web design, and filing to be the best fits for myself. Obviously other people would have other fits that fit with what type of needs they have.
As far as interacting with people... I find interacting hard unless I find special niche groups to interact with. My husband is the same way. We love board gaming groups. Science fiction fans. In college, I joined the Society for Creative Anachronism (SCA) which I stopped doing awhile back. They make outfits from rennaisance and Elizabethan period and recreate history at various events. Again, another pretty geeky or socially inept group to hang out with. But caring, wonderful people that you want to be your friends, at least usually.
Anyways, I'm sharing probably more than you want to know... but I just wanted to share somethings to give you hope that your daughter can find her own things in life, such as work and social groups. It'll probably take her awhile to figure out where she fits in and what she has to do. With my daughter I feel that she has her own rule book in life. It's not going to match mine or other people's and it probably will take her longer to do the adult things when she gets to that age, just like it's taking her longer to do the developmental things as a baby, toddler, and preschooler. Be proud that your daughter is smart and interacting at least some of the times. She will figure it out, and having a diagnosis probably will help her and give her support to find people who can be role models and realize what her role in life is.
Oh, having a diagnosis might help your daughter get into college (if she hasn't gone through it yet, and if she even wants to) and get help taking classes. Or at least starting out at a community college or classes online on the computer or something. Having support with helping her get through what issues she has (whether the diagnosis is entirely accurate or not, they will help her with the issues she does have instead of doesn't have). I know with ADD you get special help with things. You have to ask for it. It also helps having parents help you along too. I was not diagnosed with ADD until college, and my parents did not accept the diagnosis. I had to find out everything for myself, and it was harder because my brain was just not focused enough to do it quickly. But I did it eventually.
So hang in there... be proud of your daughter, and be proud of being her mom.
I reread what I posted... wanted to add a few more things.
MJIthewriter is immensely gifted, artistic, wonderful and amazing at writing and drawing. Maybe her parents will post a response to you as well and they can go on about how people with autism/PDD can be incredibly intelligent and caring people.
I also didn't know if saying reading what MJIthewriter posts meant that what Sally44 posted meant nothing. Sally44's response was amazing! You could check out her other responses to other people and could get lots of tips and understanding.
Also the other thing was that I mentioned a sensory integration disorder diagnosis was the most accurate for me. I was recently diagnosed with that. I was too ashamed or embarrassed, I suppose, to admit it to anyone until recently. I had sensory problems since I was an infant, as my mom can attest to. The ADD was diagnosed in college, and the mild OCD was diagnosed several years ago (again I delayed getting a diagnosis on that because I was embarrassed). My parents never accepted the ADD diagnosis, so I didn't bother telling them about the mild OCD or the sensory integration dysfunction. I also was diagnosed with lupus many years back. They at first didn't believe me. They never read up on it. They didnt' want to know so everytime I tried to bring up the topic of health problems I was having, my parents changed the topic or would say "What else is wrong with you?" Now they've read a few things, but I think they are still skeptical. I don't talk to them about those issues either. Seriously, the best thing as a parent you can do is to not tell your child they must be imagining it or making it up or jumping on the bandwagon or using something as an excuse to behave how they want to. It doesn't sound like you are doing that based on the fact that you are bothering to go on an autism forum. But, be careful... my parents are loving and caring... but they easily fall into the trap of being skeptics of everything and it's hurtful to be told that you are making something up, it's all in your head, or that you should just grow up and get over it on your own. I know lupus is not the same as autism. But the not being believed when I had years of tests from doctors and years of health problems. And my parents would rather believe or not listen than to hear what several doctors diagnosed me as.
When we went to the first MAAP conference in Indiana when MJ was nearly finished with grade school, I met older people who were diagnosed later in life. The way I understood it was they "slipped" through the cracks. There were many reasons for this.
That was when I found out about Aspergers and the spectrum being large. It gave me hope and something to reach for as at the time MJ was doing terrible in school with the teachers not having had experience with someone like her. Her conversations were nothing like you see now posted. She had no friends and the times we thought something would develop fell flat as soon as they saw what she was like.
She did parallel play well into middle childhood. She would hand things to others to hold then run off across the street to the field to play in looking for her bugs, etc. She was into mechanical things early on like the dome shaped ventilators which took us some time to figure out what she meant by "squeaky things". The dome shaped ventilators were on top of buildings.
I have a memory of her getting into the moth ball like thing in the bathroom of a restaurant and wanting to take it. The language that started with her was peculiar to say the least. At a restaurant, she told the waiter to "kill the man" meaning her dad. How that came out????? She wanted to take the cook home. He was a Japanese cook who cooked in front of us.
When we went to parks, she hung around the trash cans to get to the bees, yellow jackets, etc. She was always running off from us. We had to call security in the malls. She was not stranger aware. I had others warn me when she was little that I had better be careful or someone would take her.
I invested a lot in reading about autism, asperger to learn what I could that might help.
As to MJ, she was diagnosed at 2 with significant developmental delay. She had no language before 3. She was like the ever ready bunny....meaning extremely hyperactive. I shared with MTgoat how she did not use toys like "so called normal" children are supposed to. I have pictures of her wearing the Johnson Johnson squares. In the picture she managed to get one over her head which I had a time getting off and put two differenct sized ones on her feet. She stacked things, moved things place to place. The speak & say, she would put toys on and watch them spin. She did not hold her arms out to me to be picked up. I have a picture of her arching her back unnaturally when I am trying to hold her. I had not seen anything like this, so I knew something wasn't right. I asked the doctor at a year and a half about behavior and language. He said wait till she is 2 and that is when her history begins. She also had fluid in her ears which led to tubes being put in. That was with the 2nd evaluation I requested.
I was told that if it was the hearing, the tests would have been low in certain areas but not all which is why they told me she had a significant developmental delay "across" the board.
We started with early childhood intervention. Later hyperactivity would be added to her "label" At 6 at the Waisman Center in Madison WI, a whole team assessed her, and that is when she was diagnosed with PDD-NOS.
We asked for another diagnose when she was about 12, and it was done by a Psychologist at a local hospital. The diagnose she had at 6 stayed. That was when it was explained to me that because she didn't have language before 3, she did not fit the Asperger's label.
Years later with all we have gone through, and how she can now write, I can't help but wonder....but I am not the expert. I met Temple Grandin. She got a PH.D. I reached out to her when MJ was still in grade school and having so many problems. Temple's life gave me something to hope for in MJ's case. I focused on language with MJ. I gave her my art supplies to use, bought things so she could develop what seemed to be an ability with her.
Has she made in life? You tell me. She went 2 years to an art college, with a multitude of stresses going on. She had meltdowns right and left and finally due to her getting involved with the neopet forums, was unable to keep up and her grades slipped. Only she can address the internal things. I can share what I see/saw. She had no friends still at 18, 19, 20, and so forth......
She bites & hits herself when she melts down...you tell me. Should she do that? We did not pull punches with her in telling her over the years that "autism" is not an excuse for bad behavior. I never wanted her to use that as an excuse to achieve or change.
Do I worry about the future for her? You bet!!!!!!!!!!!!!!!!!!!!!!!!!!
I felt like I had to prove and justify her diagnose because she turned out more high-functioning which only put more stress on me because she wasn't achieving like "others".... I wanted to get off that vicious cycle. Why didn't she get a degree like Temple or Beth Moreno or ________ or ___________.
I cannot answer that. I just know what we have gone through and continue to. She has had a number of people to help along the way and once again, I will say: I am grateful for ALLLLLLL the help she received that has helped her to make it this far.
Did I have anger over the years about the way she was treated by some people...you bet! She was called a "retard"...among other things. I prayed to forgive. I prayed to understand. I think God answered my prayers in giving me the willingness to learn and reach for answers. I encouraged MJ to believe. She prayed with me as the years went by. I read a devotional to her before she went to school almost daily in Junior High and early High School. I had to get her up as she would be up during the night unable to sleep, sometimes waking us up with her complaints. We would sit on the couch with my rubbing her back.
I told her the best thing I could ever give her is the opportunity to know God. I knew He could help her where I couldn't. I knew I was not a "terrific" mom. I struggled with her behavior. I struggled with knowing what to do. Because she would blurt things out in front of others, I learned better about "honesty". I learned to cherish that aspect of her. God gave me a child that didn't make up lies. She left the gum rappers right in the open. My other daughter who is 17, lied right and left. I'd say, "Did you such and such?". She'd say..."no".
I'd ask MJ, did you such and such? She admit it. Now years later, I cherish it. Now a year later soon to be 2 after MJ left home, I cherish what I used to complain about....that was that MJ did yard work. I could never get her to help me much with inside the home, but the flowers outside...she took care of them. I would ask her to do something and she would end up doing something entirely different. My husband doesn't particularly care to do yardwork, nor does my other daughter. But MJ could spend hours outside with her bugs (she always got sidetracked). Who else would try to stick a milkweed beetle by my ear so she could rub it and make it squeak?
I would tease her that all the bugs were shrieking, "Flee, flee...here comes MJ"!!!! She just had to have them!!!
Let's put our hearts and heads together to reach for the best in our children. We are not perfect, but we have hope.
I think my mom put it really nicely. I really wish that all parents of autistic children can take time to read my mom's posts as well.
I'm working hard on the not biting myself with meltdowns. I think I've "graduated" to some degree. I still sometimes hit my head when frustrated, but more often it takes the form of uncontrolled weeping. I may cry for hours. To most people it may seem like it comes out of the blue. To me a lot of my meltdowns occur either out of stress such as usual not being able to find items when I need them, conflicts with people, overwhelming noise at stores, and things that stress "typical" people. Those meltdowns are somewhat predictable. Then I also have a number of meltdowns caused by memories.
I'm gifted with exceptional long term memory (at least people seem to believe). I can remember things that happened to me in pretty good detail. I can remember things that I read, etc and I can also remember my thoughts and feelings at the time. This can be a good thing.
But what does one do when something tripps off and causes me to replay a bad memory in my head. Sometimes it will play over like a never ending loop. My mind tries to figure things out. I find myself imagining different outcomes and different things I could have done... For instance those who called me "retard" at school, my mind would replay how the scene happened, then I'd go back and wish I would have done differently. I find myself imagining that I stood up to the bullies and spoke something that got them to stop and think... Then my mind goes back to what actually happened. Then my mind goes back to the imagined outcome...then it goes back and forth... It causes much anxiety...then comes the tears...
At the point of a meltdown I'm feeling like MAKE IT STOP!!!!!! I can't stop crying so the natural reflex is to inflict pain sharp enough to distract the thoughts.
But I know I can't do that, so I;m working on better ways. I'm learning that feelings like being rejected or lonely can't be coped solo. I'm not a super person. So why am I expecting to do something that even "normal" people can't do so well? How do the "normal" people cope with these feelings. They talk with each other. They find friends to express those thoughts and feelings.
For me the internet has been a pretty good tool to help with that. I've found a number of very supportive people I can share my thoughts with and they've helped me.
But in spite of it there are gifts. One of the gifts I have is being able to visualize things in my head. I can make up characters and their own world. Those characters become a source of entertainment and a stress reducer. They also help me figure things out that I don't understand. I get a lot of my "theory of mind" exercises by imagining conflicts with my story characters. I can see ther different perspectives and see how both characters feel about each other and the conflict with each other.
I try to apply that concept to real life and with other people. I may not fully understand their point of view, but if I can imagine different outcomes and different ways they can interpet me it helps.
As a result I also have something interesting that I can write about and draw as well.
From what my mom is describing, I think as a kid I may have spoke with delayed echolalia, but I never thought of it that way. I was likely quoting soemthing I felt fit the context of the situation like one would quote famous people or Bible verses. It just seemed to fit to me...whether or not it really did to other people. That's where it helped for people to go back and say, "What?" What do you mean. I may not be able to answer immediatly, but if I found out that I was confusing someone, it helped to work together to help understand each other.
I wish more people in life could be that way. It would solve a lot of conflicts if people can just say they don't understand something. I'm rambling on. I was looking up another thing similar to echolalia and there is a related thing where an autistic person can repeat their own self. I believe I do that quite often. It's having the same urge to speak the same thing even though it was said before. The feeling doesn't fade immediatly after speaking the thought. The same seems to be with emotion. It doesn't fade right away.
Thank you every one for your responses. You do not know how much all your responses have meant to my wife and I. They were all very helpful. I did some reading on echolalic speech but I don’t feel that it fits what my daughter does exactly. She does repeat parts of songs but her answers are often irrelevant to what has been said to her. She usually picks a word or phrase that seems to sound good to her and then keeps it for a year or more as the answer she is going to use when people talk to her. For example she became attached to the sentence “so long and thanks for all the fish” it actually took us a while to discover where she had herd it and passed it of as just one of those things. It was from the movie “hitch hikers guide to the galaxy”. Whenever she would leave a place she would say it, if there were people there or not. At times you could ask her a question and that would be the only reply you would receive. Part of the problem is also that her speech is slurred and unclear so strangers have no idea what she just said. They ask her to repeat her self. She either ignores them or does so again and again and again just as unclear as in the first instance. That being said I don’t want to ignore the fact that she is capable of communication. She can hold a conversation if the other person is patient enough to wait for a response. She will have a conversation much more freely with myself, my wife and her sister and brother than other people. Even the speech language therapist noticed that she seemed much more prone to talk when my wife was with her.
MJIthewriter that thing you spoke of (the erg to repeat a word) sounds very much like my daughter. Once she has found a word and started with it, it is like she can’t actually stop. Thank you for your reply it was good to read something written by a person with autism.
I have read up a bit on autism since I left my message. And though her intelligence is in the average range it has large variations, which if I have understood correctly is a sign of autism? I have gone over the report again from the educational psychologist from when she was 21 and she has definite weaknesses and definite strengths. For example her is a list of her lower scores.
Sentences for dictation : 8 – 10 years
Prose passage: below ten years of age
Spelling: 9.4 years
Hand writing speed: 12 years
Designs: 12 years
Numbers: Weak, below a 7 – 9 year level
Words: 10 – 12 years
Didget span: 5 percentile
Auditory memory: 7.10 years for accuracy
11.8 years for comprehension
It also said that her fine and gross motor skills were “weak” and also her balance.
At the other end she did very well at perceptual organisation.
All of her other scores came between these high scores and the low ones mentioned above. Surely a difference between 7.10 years and 98 percentile is huge? When I mentioned this to my wife she asked why then was she not diagnosed with autism then? Instead we received a string of different diagnosis’s ranging from learning difficulties such as dyslexia and dyspraxia, to a hearing difficulty called Central auditory processing disorder and speech language disorders such as Phonological awareness difficulties, response buffer difficulties? And eventually Apraxia. Prior to these we had psychological diagnosis such as depression, anxiety and at one stage it appeared they were trying to pin Schizophrenia on my daughter. Schizophrenia runs in the family and so we know its symptoms well, my daughter does not have this. In school she was taught by teachers who believed her to be un-teachable. Her lack of reaction either verbally or otherwise made them come to conclusions that my daughter was either deaf or retarded. My wife went to many upsetting meeting with teachers and received weekly phone calls about concerning behaviour. We always believed my daughter was intelligent, even hidden behind her far away looks, strange behaviour and lacking communication it was clear to me that she had ability.
It is difficult for us to know what to expect from her. How much do we push her? Is she trying her best? What is best for her? I don’t want to belittle her difficulties. One of her therapists wrote: “Will require significant support throughout her life” “has significant difficulty processing written and verbal language” “does not make direct eye contact, uses extremely short sentences and has response times in excess of one minute or entirely absent with unfamiliar listeners. She is extremely routine bound and tends to be inflexible about changes in her schedule. When unforeseen and unavoidable plan changes do occur, she often reacts emotionally and is not typically able to request assistance or explain her feelings” It is plain to me when I read reports with sentences like this that my daughter is not capable of the same things we expect from our other two children. At the same time the reports mention her strengths as well, strengths that I feel that we can be proud of. Still I feel that my daughter communicates and understands more than a lot of these reports give her credit for. Today for instance she looked up at me and said “hello Dad, How are you?” then later when I was leaving she sort me out gave me a hug and said “good buy Dad, I love you” She sounds so normal and capable when she comes out with things like that. And they weren’t just repeated sentences. A while ago she would say to every one she saw “hello, how are you” then walk away to another person and say, “hello, how are you” with out waiting for or wanting any response. But today she said it and then waiting for me to answer her eyes still focused on my eyes.
How can my girl be both disabled and yet so normal at times, normal enough to pass high school, thought I should probably add that she did it while taking half the normal work load and only passing by two marks but still passing. My wife and I thought it would be impossible. Every one did, but my daughter is nothing if not determined. I knew she struggled to understand, she could not read and understand the textbooks, she had a tutor who knew how to tutor special needs students but even then my daughter was a challenge for him. Still I have never seen any one teach my daughter so well, we didn’t manage to get her to tell the time until she was sixteen and even now she struggles. But he got through to her science and maths in ways I never would have thought of. I felt that if he had been there to teach her how to tell the time she would have understood a lot quicker. She sometimes astounds me with sudden comments, or words; which demonstrate an understanding of physics that I did not think possible. It was not something she learnt at school as we thought it would be beyond her capabilities. But now I think of it, despite being taught in words, equations and textbooks it is a visual sort of science. Visual things my daughter does very well at, I sometimes imagine she must see physics all around her.
That’s the other thing I fail to understand, how is it that she will sit at the computer all day working on a story or poem and having read some they are reasonable, but still struggles to read books beyond the children’s section of the book store. Surely as an adult who can write a story she should be able to start reading books more equivalent to her age? Is she some how fooling us? Her work is spelled horribly and has terrible grammar but the content itself is well beyond her reading age. Differences like this frustrate me because I cannot make the sense in them.
In fact the differences between her abilities and difficulties frustrate me. The specialists have not seen her at her best. If my daughter is stressed then getting her to speak at all is a miracle. The clinical psychologist who diagnosed her with autism spectrum disorder and had written down the bottom of the report ‘autistic disorder’ did nothing to help my daughter feel relaxed. My daughter failed to hold a conversation of any sort other than to repeat the same word over and over, refused to look at the psychologist in favour for the women’s shoes. So there my daughter was ignoring the person making the diagnosis almost completely, staring fixatedly at her shoes (does any one know why?) and repeating the same word over and over. This coupled with reports by other psychologists who had seen my daughter in similar stressful situations and other therapists have lead to a diagnosis of autism.
It may be quite obvious by this point. I don’t know what to think. I know she has difficulties, I also know my daughter as the intelligent girl who will write story’s, create sudoku puzzles, beat me at strategy games and pass high school. The girl, who can hold a conversation, can look a person in the eye and has a fantastic imagination. I can see the difficulties she has and had in some of these things also. But I don’t know what to focus on, how can I focus on either one with out seeing the other and how they insist on contradicting one another. Why will she hold a conversation with me one day and act as if I don’t even exist another day?
I did guess for her to get to the state she some times get to (having given her self a number of black eyes in her tantrums) that she must be suffering in some way that I can not understand. It both saddens me and admittedly frustrates me when she does this. I will do what I can by working on my own frustration.
A lot of the books recommended sound good I will see about them at the library.
One final question; Is it possible that my daughter does have Aspergers but also Apraxia and some other difficulties that can make her difficulties seem more severe than they are in reality?
Sorry if I have board you all with this long letter. I have spent days working on it to try and best express myself but I still feel I have presented a very mixed piece of writing.
What you describe is still echolalia. Sometimes they use phrases in their appropriate emotional context so they sound okay, but maybe a bit strange or rude or eccentric. At other times they use echolalia phrases, sounds, songs to take their turn in speech or initiate speech but because they cannot formulate their own response by putting together words into a sentence that conveys what they want to say they use a repeated utterance instead. It can be something you have just said to them or it can be something they heard days, months or years ago. Depending on the environment, that can cause they to repeat things heard or said in that environment along time ago. Or they can use words and phrases from one event and use it in a similar but different situation. For example, a child was in a pushchair and a dog called Jack came up to him and bit him. From that point the child could use the word 'Jack' instead of the word 'dog' or 'pushchair' or 'bite'. And you would really need to have been there and experienced what happened to then recognise the word 'Jack' and think back to that event to understand what the child was trying to convey in this different situation. Does that make sense.
If you have a look on this website, it gives alot of examples of echolalia speech http:// groups.msn.com /theautismhomepage/echolaliafacts.msnw. Just take out the spaces I had to put in so it printed the webpage address.
The percentile differences are typical. My son at age 6 was on a 93 percentile for pattern recognition, spatial awareness etc and a percentile of 2 for understanding verbal instructions. In a way, alot of the different diagnosis your daughter has been given are still relevant, but added up they equal an autistic spectrum disorder. As well as autism my son also has an auditory processing disorder (CAPD), he also has sensory issues, Sensory Integration Disorder, suspected Dyslexia and a severe Speech and Communication disorder.
On intelligence tests he comes out at the high end of average. Yet the autism means that he has great difficulties with concepts involving words and numbers so he is still working at pre-school levels and probably will for the foreseeable future. Yet he can also have a conversation with you about the force of gravity, or global warming, or death.
The delays in responding to verbal questions is down to auditory and language processing. She may not hear as we do, it will definately take her a long time to process what is said to her. Even if she understands what is said to her she may be unable to 'grasp' the words she needs and put them into a sentence to convey what she wants to say. That doesn't mean she is being awkward or has low IQ, she basically can't do it, and her ability will fluctuate greatly day to day and throughout the day.
My son is nearly 8 and I find it impossible to find books that will interest him but which have only pre-school language. Your daughter will be choosing the books she chooses for a reason. It might be the print type or size. It might be the way concepts are explained in simple terms. It might be the lack of complex social interactions, dialogues etc that she would find impossible to understand. But that is all down to her understanding of another perspective and that is different to understanding yourself. Autistic people can have alot of self awareness and be very able to express themselves ie. in poetry. But have no understanding of anothers thoughts, feelings, emotions etc. They appear selfish, but they are not because to be selfish you have to be able to see anothers point of view or situation and still ignore that and only seek self satisfaction. An autistic person seeks self satisfaction because they have no or little understanding of others. If a situation is explained to them some higher functioning children/adults can get an understanding but it has to be explicitly explained to them because they don't understanding outcomes or implications etc.
Yes, disabled and yet normal at the same time. That is exactly it. It is bizarre in the same way that someone with dementia has brilliant long term memory, but no short term ones.
My son asked me where my husband and I met and fell in love! He watched the film Ghost last night and cried buckets. Then at other times he makes no sense at all! You can work on all the areas she has difficulties with, but you will need advice on how to go about it.
For example at my childs school he is being taught how to ask for help using a help symbol that he has been taught to take to another adult. He is also being sent to another classroom once a day to give a message to the teacher and to then tell his teacher what the other teachers reply was to his question.
You can teach change by having a change symbol, by talking alot about change and what it means and how change can be something good. Obviously your daughter is an audlt and so it would need to be approached differently, but she obviously has alot of potential. She also needs to be taught how to recognise her emotional state and how to take actions to protect her self from meltdowns and overstimulation. That might involve first recognising where she is on an emotional scale, and if she is at or above a certain level then she needs to go to a calm place and maybe practice deep breathing.
When my son gets upset he tells me he gets completely flooded with emotions that are totally out of proportion to the incident (from our point of view), and that he cannot stop the feelings or get them under control. But at the same time he maybe getting really upset about something, but he still wants to do it, so it is also the combination of sensory overload mixed with frustration at not being able to do something you want to.
Hello I usually write really long messages but my capacity for doing so isn't very good today, plus I want to keep it as simple as possible so I don't ramble too much. I just wanted to say that aspergers can be diagnosed even much later in life - I know several people who are over 50 and have only just been diagnosed, I just turned 25 and I'm still being asessed for my diagnosis, though it's one of those things we all know, I just wanted it recognised for closure, I spent my life feeling alien and not knowing why; I just hope you are not having trouble with believing the diagnosis because to some it's a sad and debilitating disorder. My parents just kept telling people I was a character, or quirky, they didn't like the idea of labels of 'disability' and now it's up to me to get my own diagnosis. They thought I hadn't noticed I was different or didn't care, but they were wrong. From the sigs and behaviours listed your daughter sounds like she does have aspergers. As you can see in this forum a few people say their children have been diagnosed but have trouble believing it because they can do this and that with such skill - I think the thing to keep in mind with aspergers is that it is a spectrum, different severities, different skills etc, eg I am not good with numbers, but excell in art and English. In short a diagnosis of aspergers doesn't mean to say a person is a vegetable, some of us can be difficult to distinguished from the non autistics, which is why alot of aspies get diagnosed late in life, hope that helps.
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