Autism: what needs to change?

by Ingrid Robeyns on April 2, 2012

Today is World Autism Awareness Day. Autism manifests itself in many different ways, and it is a saying that each person with autism is not only different (we are all different!) but rather experience autism differently, and has different aspects of autism which affect him or her. In this series of post around Autism, I do not just want to discuss issues around autism from a third-person perspective (like the over-diagnosis question, or new scientific advances, or new books we’ve discovered), but also give the floor to those who live with autism, or those caring for & working with people with autism. I’d like to ask one question: What are the most important changes which you’d want to see related to autism, given your life and the context in which you operate? My (very particular and context-depedent) answer to this question is below the fold.

update: There is an excellent post over at Neurotribes written (and in part edited/collected) by Steve Silberman, which addresses exactly the question what needs to change. DO go read it.

I want to focus on one very concrete thing which is relevant just for the Dutch context. The Dutch government wants to cut 300 million annually on the budget for special needs education and for special needs help in regular schools. The idea is that more children should go to ‘regular’ schools (since, as has been explicitly said repeatedly, special needs education is more expensive), and all teachers in regular schools should get additional training to be able to deal with the disorders and problems kids in their classrooms have. These classrooms are already large now – often 30 kids in a classroom, and burnout among teachers is already a serious issue. I think it is a disgrace that such a rich country, which annually spends more than 5 Billion on direct and indirect subsidies of fossil fuels, and about 11 Billion in sponsoring private home ownership via taxdeducations, wants to cut on its most vulnerable children. We, the Dutch Taxpayers, can easily afford to not cut special needs education if only we want to; but our politicians think those teachers and kids can do with a little less. I hope something will happen that avoids this cutback, and that our politicians reconnect with reality in the classroom.



Z 04.02.12 at 8:52 am

In France, the official policy is that special needs children should join regular schools. In order to help them, and to actually help any children in need of some extra care, there is a dedicated network of specialized teachers operating within schools. And in France as well, this network is being severely cut back. At the current rate, it will have totally disappeared in 3 to 5 years. All I can say is that I join Ingrid in hoping for a change.


George Berger 04.02.12 at 9:32 am

I emigrated from New York State to Amsterdam in 1972 and left on 8 Jan 2009, thanks to the New Healthcare System, which failed me. It is a disgrace that the Dutch government (Cabinet and Parliament) wants to introduce the measures described above. I think it is not fully accurate to state that today’s politicians in the Netherlands should or can ‘reconnect with reality,’ in the classroom or anywhere else. They seem to know exactly what they are doing, but simply do not care about (or are not conscious of) some of their actions’ effects that many Dutch citizens like myself consider bad. Evidence for my surmise is seen in the similar behaviour of the Dutch, British, and Swedish governments (I’m familiar with these). All are reducing healthcare and support services, especially to those most vulnerable: the mentally and/or physically handicapped, the elderly, immigrants, and as many unemployed people as possible. I don’t know what the agendas are, but I strongly suspect that many of the budget cuts are motivated solely by ideological and financial considerations. If any ideology is functioning, then the relevant politicians and parts of the public are indeed *connected* with reality, but the connection is, in each case, via some ideology (perhaps varied across nations and governments) that enables actions that dismay many. If I am right, each ideology inhibits regard for others’ well-being.


P. Baker 04.02.12 at 11:30 am

Father of an autistic child in the U.S. We are mainly terrified of losing what little we have. Here autistic children are supposed to be “mainstreamed,” placed in classrooms with neurotypical children, with special assistance if necessary. Every child is supposed to have an Individual Educational Plan. Our son went through 2nd grade, and it simply wasn’t working for him; by the end he was terrified to go to school every day. Now he is being home-schooled. We also have services provided by Medicaid: chiefly occupational therapy and in-home respite care–a lifesaver for both me and my wife. The wages of our respite care worker have already been cut, and, not wanting to see her starve, we’ve made up the difference ourselves. We have many worries: what will happen to Medicaid if we elect Romney and a Republican congress, as seems likely? As we are not in a position to leave our son enough money to live on, what will happen to him after we’re gone, in this you’re-on-your own society we’re building?


DaveL 04.02.12 at 12:51 pm

In my state, Massachusetts (or perhaps just in my town?), the policy is that insofar as possible children with autism or learning disabilities are supposed to be mainstreamed. There are several reasons put forward for this policy:

1. It exposes the child to “neurotypical” (h/t P.Baker@3) children.
2. It exposes the neurotypical children to children who are not.
3. It is cheaper than “out of district placement” (which means sending the child to a school explicitly for children with learning disabilities, etc.)
4. It is more predictable (and hence cheaper), in that the number of children in a cohort is quite predictable, but the number who would not be mainstreamed under an alternative program is very unpredictable.

A large number of children in MA have IEPs, have prescribed meds like Ritalin et al. The costs of SPED are rising much faster than education costs in general; in my town the main driver of increased school spending is SPED. The state reimburses a lower percentage of SPED costs each year, it seems, and in the current economy sees needs it considers more pressing where any spare change goes.

My experience (my children are “neurotypical”, but we know many children who are not) is that mainstreaming is helpful for children whose problems are not severe, and is helpful for the children without problems as well, as they become familiar with children who have such problems, instead of never seeing them. However, there is a cost, which is increased chance of classroom disruption. Many children have aides, but in some classes even that is not enough to keep the class from being disrupted. The more children with special needs in the class, the worse this problem gets. It does not help anyone to mainstream when it reaches that point.

However, it really is all about cost in the end. Up to a point, mainstreaming is much cheaper than outplacement, and actually has some benefits for some children, so school systems and towns embrace it. In fact, fewer “out of district placements” is always a bullet point on the school budget presentation at Town Meeting, if possible. A few (or in some cases even one) OOD placement is a teacher salary.


Noriko 04.02.12 at 4:58 pm

As a mother of a child on the spectrum, I’d like to add that I would like to see K12 teachers get a lot more positive training on educating children with disabilities. Many only get exposure in their education programs to the legal side of issues of access to mainstream classrooms. However, being more consistently trained to help children with disabilities involves techniques and awareness that would be beneficial to most, if not all, the children in the classroom. This is certainly what I have observed intuitively practiced by the best teachers for my child. And it might take some of the fear away for K12 teachers without those intuitions.


Meredith 04.03.12 at 3:34 am

Dave L, as a fellow Mass resident whose partner has served on the local school committee for many years now (and whose two children really did benefit from growing up in the company and sometimes friendship of other children who would have been “relegated” to god knows where when I was growing up), I’m not sure you’re correct about the savings to towns of “mainstreaming,” at least in general (maybe in your town, but not in mine — but which of our towns is typical?). The state funding formulas are so complicated, and their effects may vary greatly according to, e.g., size of town and percentage of students who once would have been sent to “special schools.”
Anyway, your larger comment: Thank you for it. How can we get our state politicians to talk about all this so thoughtfully?

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