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Autism & Oughtisms 
I really love your blog!! I was living in New Zealand last year with my three kids as my husband is fron NZ but I am from New York. My son went to school there with his brother and he really loved it and he was treated with respect and dignity. He has ADHD and CAPD. He is really well behaved but needs extra help. Now we are considered returning but I am so confused as he will be probably “educated
here but he wont be with his brother and sisters and he loved feeling part of the community. We also miss the space we had there. Is it better to have him properly “educated” here in New York or to keep him with the community and brothers and sisters and hope that he gets extra help at the mainstream school in new zealand?? Help please
Hi Jeanine, I’m struggling to understand your question. I think you’re trying to ask my opinion on whether he would be better off eduated in NZ or in NY, and you’re saying he would be mainstreamed in NZ? In order to share a meaningfuly opinion on the choice, I’d have to know what the eduation system is like in NY, and I am completely unfamiliar with that unfortunately. I am familiar with certain aspects of the NZ special education system, but even then, I am not familiar with ADHD or CAPD; my own son only has autism. So I would likely be out on a limb if I tried to comment on how well NZ might cater to your child. I’m also not aware of how immigration status would impact on eligibility for special needs funding. So I don’t think I can be of help to you at all! I’m sorry, and I hope you can find the answers you’re looking for. All the best.
Hi-thanks for your response-maybe you could explain what services your son is getting in NZ, that would be great. My son was in the NZ ed system last year since we lived there and he was in a speech group, and had a teacher aide for 1 and 1/2 hours a day. The school was going to apply to ORS for him to receive a special education teacher but we left because my lease was up in my NY house and my dad had brain cancer and I was pregnant with number 4! Now we are thinking of returning but again, was just wondering how you thought the special ed system was going for your son? Here in NY, he would receive an inclusion class with a special ed teacher and a regular teacher for the day but again he would be away from his brothers and sisters and his community. He progressed in NZ but he needed assistance and same here, he progresses but needs directions repeated and broken down. We miss the laid back lifestyle and open space but again, would love to know if you thought your son was getting “properly educated”. Would love to hear from you again, and I hope I was more detailed.
Absolutely Jeanine, thanks for the clarification.
I am very satisfied with the education my son receives here. He attends a satellite class run by a special needs school (the class itself is situated within a mainstream school but is staffed and resourced by the SN school). He has a head teacher, and usually about two teacher aides, for his class of about eight students. Through the school he also receives his physiotherapy, occupational therapy, and speech therapy, all built into his cirriculum. They provide other less central therapies too, like music therapy.
He is doing well, much better than I ever thought he would.
The level of support received varies according to an individual child’s needs of course. My son qualified for ORS which means he does get significant help and it’s all funded by the government. I have heard plenty of stories of ASD kids who didn’t get ORS funding and significantly struggle within the mainstream environment; that mainstream teachers do not have the necessary training or knowledge to cope with special needs children. And that their teaching aides to assist them within the mainstream environment, are not provided for long enough for what the child really requires to do well in class.
I hope that helps. Do feel free to ask any further questions and I’ll help if I can.
I really appreciate your help- I honestely feel a bit confused because I do not know anyone whose child needs extra help. To clarify more we lived in Hamilton-Horsham Downs. I honestly thought the school was fabulous and my son loved being there and with his brother. I mentioned for the above reasons why we left but again we are thinking of returning. However, a main part of the decision is my underlying question of is it better for him to be with his siblings in a school that he loves in New Zealand or stay here in New York with the fast pace but then he will get the extra support he needs-the occupational therapy, the physical therapy, the special ed, the speech therapy but he will be away from his siblings, and immediate neighbors.In New Zealand, I was able to get him speech therapy, physical and occupational therapy but I found these services for him from various people. I am an occupational therapist myself, so I knew how to navigate the therapy a bit. I know this is a lot to dump but was just asking your general opinion. What area do you live in and please feel free to weigh your opinion in. So glad your son is getting what he needs-do you think children do better when they feel accepted in mainstream or when they truely get the services they need?
Just one more note to my thinking through decision making-when we lived in New Zealand, we shared about 5 acres with other houses. As a result, my kids would run outside all the time and play with the kids next door and run around on all this property. That was so freeing for them, espeicially for my son with special needs. He made great friends with two of our next door neighbors, not just acquaintance but great friends. Again, that is huge for special needs-as you know. He can be shy and a bit withdrawn-even though is official diagnosis is not autism, to me, it might as well be. So I loved that aspect of New Zealand-which is seperate from the education. Obviously, living in new york, you cannot just run outside. I feel he is more withdrawn here. Also traveling around New Zealand has allowed him to really open up to loving the beach as he was afraid of it, enjoying hiking and just learning to take more risks. Again he is more withdrawn here as I have to be more protective and obviously there is less space. So the above mentioned is a big pull for me.
So pretty much here, he will definately receive the support he needs but at a price of not as easy going of a lifestyle as we had,being more withdrawn and a bit more tentative. And in New Zealand, he may not receive as much support in the classroom, but he will be a bit more laid back, and perhaps more open and a bit more social. Also, we lived on top of a grain farm in New Zealand and my son loved the tractors and the mechanics. The owners are family friends and I know they would have given him a job when he got older and helped him as needed. But maybe I should stay here so he can get the education he needs to open up more doors than the grain farm? Even though the grain farm is a good job-so you can see my dilema as to where to live and would love your opinion!
I just read your Death-Cure post and want to share with you that it spoke to me – my heart and soul. I’m not much of a blog-follower; well, in fact, never have been at all, and I’m a bit behind the times in this blossoming electronic universe. However, I aim to follow you and your extremely well-spoken thoughts on living this life of ours. I, too, have a 7 year old autistic boy whom I cherish. His communication is much more challenged than your son’s, but his spirit shines brilliantly. I hold on to hope with a desperate grip that I will someday have some sort of conversation with him and know what he is thinking and feeling.
…pause…
I think what I set out to say was **thank you for being you**
Terri, your comment really touched me, and honestly has just made my day. Thank you so much for letting me know your thoughts; for taking the time to share them and for being so supportive and kind in that sharing. I wish you all the best with your son, and I hope he makes the progress that will allow you and him to share your minds with each other more too. xxx
I recently found your blog and love the positive approach you have to parenting children with autism. My son and I have written a book, Unintentional Humor; Celebrating the Literal Mind™ that is filled with the humorous stories and original cartoons that represent my son’s literal interpretation of language. We have been speaking a schools and conferences and our presentation titled; “Finding humor living with autism” is popular with every audience. I would love to share a copy of our book with you and hope that I can help families find humor in their everyday lives.
That sounds lovely Linda, I’ll contact you by your supplied email to follow up 🙂
My life was ruined by an aspie man. I had no idea what I was getting myself into at the time. I wanted to help him and he seemed just shy and misunderstood.There is SO much support for these abusive monsters who will never change and so little support for the women who are suffering great trauma as a result of these selfish individuals. I’m over feeling sorry for my ex and I am picking up the pieces of my life and moving on. I’m going places in life. He will always be a loser who emotionally and physically rapes women and then sees nothing wrong with what he’s done. Yes! I can *totally* see why we should support aspies and be PC when they commit criminal acts of violence against women.
Julie, Aspergers doesn’t make someone emotionally and physically rape anyone, everybody with Aspergers have their own personalities, don’t blame all people with Aspergers for what one person did to you. Many people with Aspergers benefit hugely from appropriate supports, some don’t, and some don’t receive the appropriate supports at all. This is nothing to do with being PC, that is irrelevant, you need to recognise that there is no single personality or set of actions associated with Aspergers, they are still individuals, who happen to struggle with certain aspects of social communication and behaviours (by the by, Aspergers no longer exists, due to the latest diagnostic manual, the DSM-5). I’m sorry you got hurt, that is not acceptable, and I’m glad you’ve moved on.
Hi I’m looking for advice, my partner has a child that toe jumps massively when he is excited, jaw clenching and hand clenching, doesn’t seem to understand authority and will only eat certain types of food. He does make eye contact has has really good speech, so Im getting conflicting information from the internet. Should I mention this may be a problem, I love them both very much and would like to get my facts right. I’m not sure who else to ask?
It is a tricky situation Mandy, and yes you do need to tread carefully because some parents can be resistant to the idea that their child might be different or need help. What you’re describing could be a mild version of autism or Aspergers, but if it’s not impacting on the child’s education, well-being or happiness, it might be OK to do nothing. I assume you are concerned though because it is impacting on the child, perhaps the child is being alienated by friends or you think they could benefit from extra help in some areas? Knowing the child’s age might help too, and whether the child has any siblings or the parent has other children to compare developmental level. You could try raising your concerns with your partner and gently suggest they talk to a pediatrician about whether the child is OK or needs help. Do let me know if I can help you further, it is a hard situation. Good luck.
Hi Mandy, this was me two years ago when I met my husband and his son and had moved in with both. My husbands son used to do this a lot. BTW his son was 8 back then. But with constant repetition in correcting him on his toe jumping, jaw and hand clenching, along with flapping his hands and shacking his head, he has really minimized doing all these. Again, I don’t stop reminding him that he needs to relax and breath to stop doing all this. It has worked so far and I intend to keep reminding him until I know there will be no more to do. In regards to the food. It was also very hard because my husband and his ex-wife used to just give the child only what he would eat and would give up in trying new things with him because the child just didn’t want to. I on the other hand, didn’t do this, instead I encourage him to try new things even though my husband would tell me that he would not eat what ever I would serve him. To my surprise and his, he would try and eat what I would offer, even if it meant just a few spoon full. Its a big step in their menu :). Today, I can say that his menu has grown so much. We can go to restaurants and order from the menu and he will eat it with no problem. I think what help me out was that I started serving him the same food we had in our plates at breakfast time, lunch time and dinner time and remind him that he would like it and it was good for him even though he would fight against all will not to try it or eat it, lol. I have had to also teach my husband to stop using old habits that were no longer needed for a 10 year old child and were just delaying his progress as well. I had to tell my husband to stop treating him like a two year old and talk to him like a baby. This must of been hard for him, because after all, kids in our eyes will always be our babies. I belive that as parents we have to do as much as possible to have our kids adapt to our world and not us to their world (to some extend i think we can but not all the way). Because at the end, when we (as parents) are gone and out of their life, it is them who will suffer. The world is not going to be as understanding and kind to them like we are. Its hard, but if my husbands son has a chance to potentially one day become independent then I will try as much as I can to help him get to that goal, with help of professionals as well. 🙂 Just remember, it will be a very hard, exhausting, but rewarding job if you do commit to be part of this child life and your husband. I know because I have committed myself (even though at times I wish to quit because it is hard) but because I do love my husband very much I just continue.
Thank you so much for getting back to me. It’s a huge relief to speak to someone about this. He is 4 years old and I work with children on the asd spectrum so maybe I’m conditioned to looking for it. I’m not very sure. It’s more the tics, toe jumping, anger, lack of compassion and his defence to any authority, that worries me as he starts school in Septemner. It’s a very tricky line that I’m walking here, I’m a sensible woman and I’m aware of any fracture my concerns might bring.
He has a younger sibling that doesnt present any of these traits.
Ultimately I do love him and want want is best so I’m looking for the best way to approach this. Thank you for being my life line in my time of need.
Mandy
Is he attending a kindergarten? I’d hope that a kindergarten or eventually school could be an organisation that could raise the concerns with your partner, so you don’t feel caught in the middle. My personal opinion is that it’s an excellent idea to have the child checked out at the age of 4, before it becomes a potentially more serious and impactful issue in a classroom. Here in NZ we have a “before school” check where every child is screened for any concerning behaviours prior to strating school (if the parent consents of course), is there anything like that where you are, which you could encourage your partner to take your son along to? You could just treat it as a standard part of the process of preparing the child for school, if such an option exists. What you describe is quite concerning, particularly the anger and reaction to authority, that’s going to become a problem at school and is no doubt already a very real concern.
refreshing blog. have my own kid with his own issues and hoping my local er will give me a frequent visitor card sometime soon. nice to see a realistic view of a family with autism, not some sugar coated version of it can be cured if you just do this…blahblahblah. especially appreciated the entries on medicating kids. i have been busting my butt to keep my kid at home for the past 14 years and time is running out, but the worst is i cant win. medicate and i am lazy, don’t medicate and I’m a fool. thank you for stressing the many factors we deal with and agonizing over when making these decisions. especially since so much medicating is done off label with no real understanding of long term consequences.
HI, my name is Elly, I came accross your blog while looking for information for my essay, which is on neurodiversity and the social model of disability in relation to autism. I am doing a course on Autism here in UCC in Ireland. I really liked what you wrote on the subject and would like to quote a sentence, so I need to reference it. But I cannot seem to find your name anywhere……
Hope you don’t mind me contacting you for that.
Thanks
Elly
Hi Elly. Sorry for my slow reply, have been very busy lately. You’re welcome to refer to my blog, as for what name to use, I write anonymously to protect my sons’ identities so I don’t use my name. If it helps, you could just refer to me as “the author of Autism and Oughtisms” and thereafter shorten it to “the author” or “A&O” or whatever other convention is suitable and helpful for your purposes. Or you could make up a name for me and clarify that the name is made-up for the purposes of your essay – call me “Jane Doe” or whatever you like. Sorry I can’t help you beyond that. And thank you for the compliment – I’m glad you like my writing 🙂
Hi,
I have written a book which will be published next year by Cambridge Scholars Publishing [Autism, Humanity and Personhood]. I want to use a quotation from your blog in the book and I am seeking your permission to do so. The quote is as follows:
“Frankly, you’re going to be damned no matter which term you use, and I’m far more interested in the substance of what someone says rather than getting hooked up on whether they used ‘autistic’ or ‘has autism’.”
‘Has Autism’ versus ‘Is Autistic’: A Muddled Debate, In Autism and Oughtisms, 2011, https://autismandoughtisms.wordpress.com/2011/07/25/has-autism-versus-is-autistic-a-muddled-debate/. Accessed 17/12/2013.
Thanks
(Dr) Jenny Cox
Hi Jenny,
Sorry about my slow reply. Yes, that would be fine. Thank you for your interest in my writing.