It is your turn to… Ask the Autism Society

Oh my goodness. Diana I am right there with you and I may not be able to so eloquently explain it all, but I have a 19 yr old grandson whom I have raised since he was 18 months old. He was not diagnosed until he was about 13. He is now grown and still at home despite my efforts to encourage him to go out on his own. He panics big time. I even found a friend lately that wanted to rent him a room and I told him I would pay the rent for him out of his ssi and that it would be good for him to try it. We went and visited the home and while he said that he liked the place he refused to do it. He also is in extreme denial. When I have taken him to group homes to visit so that he can get independent living skills, he refuses, saying that the doesn't want to be associated with "those people". When I explain to him that he is one of those ppl, (and I think he knows it in his heart, as he particapted in a lot of special olympics functions through the years)he gets very angry with me as he thinks I am just trying to "get rid of him", which is definitely not the case. He too fell through the cracks..or in my opinion, he was pushed through those cracks. For example: They put him in sports, but wouldn't let him play, they put him in shop, but they wouldn't let him use the tools...etc..He is a wonderful boy, never been in trouble, doesn't drink, drug, or smoke. I feel so bad for him and feel totally frustrated and quite frankly a bit angry that there is not support for him and young adults like him. Thanks for listening. If you would like to chat sometime I would love that, I am on facebook, and my name is Jeanone LaMoy. Have a wonderful day. Hugs 

What about those children who do not overtly display signs of autism by age 3 yrs, like many girls? My daughter, who definitely has Aspergers, was regarded by professionals of every kind and type as neurotypical yet she was/ is not. Born in 1989, she has fallen thought the cracks in the worst way. She didn't start displaying and overly autistic and well understood characteristics until grade school, although in hind sight, her infant/ toddler behavior can now be attributed to her autism. At the time, it was not. For instance, almost from the day she was born, our daughter wouldn't sleep. She would take small 1-2 hour "cat-naps" periodically throughout the day, but never had a "normal" sleeping pattern until she started Kindergarten when her exhaustion from getting though the day would wear her out enough to sleep better, but still waking up periodically, now and then. Now that she's 23yrs old and ~only now~ diagnosed with Aspergers, her sleeping pattern remains a challenge which adversly affects her and the whole family. She has had to move back home after college because she just can't manage life on her own. Her evaluation (August '11) determined her IQ is 138 but her social IQ is 40. Another example is the fact that her "stimming" was never regarded as such; we didn't 'connect the dots' until her recent evaluation/ diagnosis. One of her stimming activities she's had since kindergarten is talking to herself (in private). We just thought she had an imaginary friend, like many children do including neurotypicals. However, at 23yrs old, she's still talking to herself. We only recently found out this is stimming for her. She goes over conversations with herself and others in private in order to practice how to communicate appropriately, have imaginary conversations with those she wishes she could converse with or to reenact a conversation she's already had with someone and it didn't work out well. Also, in hind sight she displayed strange aspects associated with food/ ingredients that didn't show up until she was old enough to learn how to cook. She would love to stick her hands into the bowl and "feel" the ingredients; squish the butter between her finders, pick up handfuls of flour and watch it fall back into the mixing bowl like snow flakes falling, crack an egg and insist she separate the yolk from the white by letting it strain through her fingers, refusing to use a mixer or spatula but mix dough with her bare hands; she had some kind of wonderful tactile, sensual experience through touching the ingredients. Later she developed strange ideas of having to melt the butter before using it and wouldn't bake unless the butter was melted. She got into "food jags" in high school perfering to eat the same things over and over until she got tired of them and then switching to other select foods and eating them for every meal. However, she has recently developed anorexia so she has stopped eating much of anything or cooking all together. Another stimming activity that developed after 3 yrs old was picking at her findernails. She couldn't leave them alone. She looked at her nails constantly picking and rubbing her fingertips together in circular patterns, like pill-rolling but she hasn't been on any medication that would trigger that. At one point she grew her fingernails out so long they looked like bear-claws but continued to pick at her cuticles until they bled. These are but a few I could mention but time/ space prevents me. We raised our daughter as if she was neurotypical. I have read a lot of support for this approach. She went to highly respected and academically challenging primary/ secondary schools and graduated from college with a BA in History thinking she was neurotypical, despite the fact she had Dyslexia/Dyscalculia (which we knew and got tutoring for) and an Auditory /Language processing disorder (which we didn't know and never got intervention for). She has suffered terribly because no one told us; not her pediatrician, not the psychoeducational psychologists at school, not the Ortan-Gillingham experts at the Dyslexia Institute of Indiana, not her tutors, NO ONE. She has suffered debilitating confussion and anxiety from not having therapy and being rejected by her peers over and over and over, never understanding "why??" The anxiety, depression, confussion and current complete denial she has Aspergers has left our daughter completely and totally emotionally, mentally and spiritually debilitated and scared. All because we raised her as a neurotypical, expected too much out of her, pushed her to do things she wasn't ready to do because her peers were already doing them, not understanding the "signs" she was struggling mightily, and MOST important, not getting her the vital therapy she needed to understand herself and the world around her. Because she was raised thinking she's neurotypical, she refuses to believe she has Aspergers. She despises idea she is like those in the autisic community and will not entertain the idea she has a 'disability'. She would rather pretend to be a neurotyical than find understand and solice in knowing her struggles are not her fault or anyone elses except those who didn't diagnose her. I am COMPLETELY AND TOTALLY against any strategic goals or movements that encourage allowing those on the Autism Spectrum/ Aspergers to "be allowed to remain their true autistic selves" because I have seen the end results and THEY ARE DEVISTATINGLY NEGATIVE". I am also totally against any strategic goals that leaves out the poplulation of young adults that may have "fallen through the cracks". Instead of just having "100% of children who show signs of autism screened by 3 yrs old, there should be periodic screening thoughout childhood. It is now being understood (see "The Complete Guide to Aspergers" by Dr. Tony Attwood)that girls on the spectrum, "fly under the radar" and may not show signs at age 3. There's no reason why at 22 yrs old (when she was diagnosed) our daughter should be considered unhelpable. Yet there is almost NOTHING available to her for late-term intervention which she SO deperately needs. Everything I read about and all the organizations I encounter talk about 'children, children, children'....our daughter may be 23 yrs old now chronologically, but behaviorally/ neurodevelopmentally, she's more like a 14 yr old. She needs help desperately and I just can't find the resourses I need that would put her in contact with other young people like her; for group therapy, support groups, summer-camps, workshops, graduate school groups, foreign study programs, young people mentors, etc...What's available is for older adults (30, 40, 50 yrs old) that she has NO business being around/ associating with and are mostly self-motivated. There needs to be an emphasis on "20-somethings", too. Treating children is far more preferable and easy but "WHAT ABOUT THE CHILDREN WHO FELL THROUGH THE CRACKS"? Our daughter is still a child, really. I am not going to wash my hands of my daughter when there's still time to reach her. And the Autism Society and other related organizations and societies shouldn't either! Thank you for your time in reading my concerns. It is greatly appreciated! Diana Stewart Carmel, IN.