Would You Use the Word “Recovery”?
Dr. Allen Frances has penned another article for the Huffington Post defending the DSM5 change, discussing that the biggest issue is that services are tied to the DSM definition and to prove his point discusses the case of a man who “recovered” from autism. Sadly no matter how well thought of, this man just simply does not get it. In fact in his article he talks about the concept of “recovery” and how that puts a different spin on aspergers and autism all together. Well I left a comment:
I think the concept of recovering is a terrible disservice to parents and children alike. It is also a misuse of the English language. My oldest child was dxed at 5 with full-blown PDD-NOS. There was no question that this child was headed toward the severely autistic end of the spectrum. However, through therapy, meds, appropriate services and support he was able to be redxed as aspergers by middle school and today is a senior in college contemplating a law career. Yes he still has deficits compared to his peers. Will they ever go away I highly doubt it. But what has happened over the decades is that he has learned what those deficits are and he is working still to this day on learning how to deal with them and help himself.
However, what has not changed is the fact that he has an autistic brain. He views the world through the prism of a person with autism. This is who he is and this is who he will always be. To say because he can navigate the neurotypical world that he is “recovered” is disingenuous at the worst and wholly inaccurate as the least. Most importantly the concept of “recovery” is highly insulting to my son, his accomplishments and who he is as a human being.
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@RaisingAspergersKids – I am not in the USA I am in Australia. We don’t have the support system that you describe. It sounds a lot better in some ways than what we have here.
Here we get funded only if we diagnose and submit before 7 years of age, then we get funding 6K per year for 2 years (up until their 7th birthday). So you can use the private system for OT or speech or even home equipment if required but 6K per year is the maximum (as long as they have not turned 7 yo). Oh also if I remember $400 per year for extra consultations for OT, speech etc up until I think 18 yrs.
Looked into it and the benefits they did not out-weight the costs, seriously 6K pa * 2 yrs didn’t even scratch our budget of what we spent. Our tax at least will covers 20% rebate if we spent over 2K so we decided private was better.
As for the school..
Well funding is not given to the individual child it is given to the school for the child. It’s a lump sum given to the school for what they see best to aid your kids requirements. Also they have to provide term meetings (4 per year) that set regular goals and outcomes that is between teachers, principle and parents. So an action plan but still funding is not attached to the student. It’s the same private and public (public I believe gets a little more than private). Probably public has more weight than private given private can kick you out if they are not happy or don’t want to take on the extra cost.
So my son is private and he is in an all boys school. It costs us $30K per year just in school fees and aide fees. Although, we are hoping in another year we can let the aide go so that will be 12K less. Not cheap and it hurts given we just had a second child last year (**cross fingers another boy**).
If we went public I worry about the bullying, private schools here at least this one has a better action policy to stop bullying.
I agree that maybe some over monitoring can be beneficial to learn the rules. Although, last year’s teacher didn’t like questions from students or even understood that his (as a teacher) questions or commands needed to be perfect and pointed so if he told my son not to talk (as my son always had an answer) my son would take that literally then argue that how can he not talk. lol crazy year we never succeeded to drill into that teacher that he needed to talk program language to my son. But yes, my son needs to learn that NT speak is not literal.
As for recovery or cure well I will agree to disagree or environmental can’t be a factor. At 3 we took him for diagnose our paediatrician thought it was environmental. His parents work from home, we are both computer programmers and don’t have relatives or friend visit. Heck, I just decided this week that ordering my groceries online worked better for time management.
Before the www world appeared used to go out, shop, talk and meet people. We (or a least we don’t) don’t to do this. So take a child from 0-3 without the outside world (sounds cruel now I am typing this) then throw him into a pre-school with people well.. humm people, what? have to share, what? they smell, make horrible noise (so used to silence at home) what? Yes environmental I can understand. Needless to say 1 year after we bombarded him with social interaction, and concerts lots of noise he still seemed to be the same but slightly improved (after then the paediatrician, and psychologist diagnosed he was ASD).
Recovery not cure I believe in too. The brain can be re-trained. We have had neuroscans, DNA testing and a lot of other testing like blood work outs etc. My son is recovering given his treatment. I know he is not cured by all means but every year we have had major leaps. We use a lot of supplements and also brain training, also social stories.
There is nothing wrong with recovery and truly it’s not a cure, it’s a life long program to teach them how to assimilate in the NT world.
Like a stroke victim their brain neurons don’t connect, for my son his scans showed us his connections, we are re-training along with social queues so that he can assimilate with the NT world. No it’s not a cure but it’s recovery as far as I am concerned.
@rolina – btw what you describe with being watched so closely is exactly something I have written about many times. That typical things that other kids get away with our children never can because they are so closely monitored. I think in the end however, our children will be better off for it. Learning right from wrong is hard and the more it gets drilled into our children the better off they will be in the longrun. It may not seem fair at the time, but it will work out in the end as long as the school also remembers when it comes to your son where the behavior comes from and treats it accordingly. Meaning, in understanding that a behavior was caused by autism and not understanding the social ramifications of an act , instead of suspension maybe detention or writing an apology letter to the person whose feelings he hurt. Something alot more productive and something that really teaches a lesson. It’s not that ASD is an excuse to get away with behavior but the school needs to tailor the consequence to actually being able to teach the child something productively.
@rolina – Hi. I definitely see your point and actually on my private blog which you can access at http://asd2mom.blogspot.com just unloaded on the wsj article. I don’t know where you live but in the USA the school district is supposed to give your son his therapy like OT, PT and speech and put an aide in the classroom. Did you remove him from the district and offer to pay for everything through a private school? Did the district refuse to go along with a mainstream plan? I am not questioning your choices for its what I would have done too. What you are describing btw is exactly what happened with my son..therapy, an aide in mainstream and educators who really knew their stuff but the district provided everything through 12th grade.
I do disagree with you however, when they use the term recovery they do mean cured. They say the person is no longer considered autistic, what would you call it if not cured? Also autism is a developmental disorder so what else would it be if not a developmental issue? Also environment. meaning what, that it was their circumstances that caused the autism-like characteristics? Environment does not cause autism. it can cause all kinds of trauma and different dxes but not autism. That is how your brain is wired and that is generally my point of the post. You cannot rewire the brain, so no matter how typical your child seems in the end they will always have an autistic brain.No I don’t think the article was about misdiagnosis at all. If it were then they would not be talking about recovery as something viable in 10-20% of those dxed with autism.
Anyway thank you very much for your comment. I am so very glad that you found a way to help your son that works for everyone.
Sorry that this article frustrates you I can see your points but I don’t think this article was trying to say that recovery was possible. I believe it was aimed more at misdiagnoses and the consequences that can occur if diagnosed too young that it might be developmental or environmental factors.
Although another article goes further and states that 10-20% can out grow or recover from autism: http://online.wsj.com/article/SB10001424127887323301104578255721887372386.html
Recovery and cure are two different terms. I don’t think it was ever suggested (even in the later article) that recovery meant being cured. As FallenSafely pointed out it means they can function alongside in society. They are not cured.
One further comment, you felt insulted that the person was glad they weren’t diagnosed younger as they saw it as a label that was disadvantaged. I can relate to these thoughts from my own experience.
My son diagnosed at 4 was also told he could never enter a main stream school. We have the diagnoses but put it aside and self-funded his treatment along with entering him into a main stream school. Yes, we self-fund an aide and behavioural specialist to assist at school and now although not aide free has come a long way. He is now entering his 3rd year at this school. I believe he would never have come so far if we placed him into the specialty school system as advised.
We have discussed it with him and he never uses his ASD as a fall coming. If anything we tell him how special he is and how he is so much better at many things that other NT kids can’t do.
Still, he gets treated differently which is both good and bad. I think a lot of the problem that we now face at school is because he is so monitored from his aide that even the smallest NT acting out he gets pulled out for a walk or has a counsellor intervene to assist him. Gets regular visits to the principle too who although is great at understanding my son, my son would never get so closely monitored as a NT kid. A lot of the time all the other boys were doing the same thing, he just got caught.
I know a lot of people could not afford self-funding, so regardless of developmental, environmental or just plain genetics funding is required to assist in these kids development.
I think to be recovered from a mental illness or whatever the consider autism means that you can function in society alongside it. It doesn’t effect your life much.