Aba reaches the parts, and makes it better for everyone else too.

Aba reaches the parts, that other therapies cannot reach.

An update for the week that is in it. Because in Ireland this week the Government party backbenchers are meeting to ask the Minister for Education to reconsider her "blockage" and ongoing animosity towards pure science and evidence based, full time ABA for children with a psychological assessment that recommends it.

But this week I want to draw your attention to a group of parents that have been forgotten in the debate for comprehensive ABA. The parents whose children don't need it.
They might also have a child that is perfectly capable of learning in a small group. A child that is motivated by praise and a willingness to fit in and a child that understands the national curriculum as it is taught by State recognised teachers.
They will be toilet trained, will be able to eat different foods with a spoon at least, maybe even a fork, will brush their teeth willingly after meals and dress themselves without fuss.
They can probably look at you when you approach them and at least return a greeting if not ask a question about you.
And they deserve our consideration in this discussion because in the current set up, their needs are not being met either.

When a child has a psychological assessment recommending that they be placed in a small class with other children of a similar ability, preferably attached to a mainstream school where they can begin to be included in activities with typically developing peers, they should get that option. The child, parent and the teacher should also get access to comprehensive clinical support As and When required, such as Speech and Language, Occupational and Behavioural Support; and the parent should be eligible for courses and training. That to me would be the best possible foundation for this child to overcome their challenges and eventually be included in the mainstream education system on their terms.

Sadly at the moment this is not the case.
Sadly when the Minister for Education says that this far and no further with regard to comprehensive ABA education for children who need it, she is affecting the effectiveness of the small classes attached to a national school.
I am talking about the very young kids with "higher functioning autism". They may have received early intervention in an ABA pre-school, they may have an older sibling who has taught them sociability, clever parents who are coping much better with the courses they have done, they may very verbal "auditory" learner (kids who can easily recite what they hear)
Even my postman would be able to tell you that these kids will do well in an outreach classes with 6 pupils to one teacher attached to a National school.

Some of these parents will be researching their options for the new school year commencing September '08.

And I want to tell them that Outreach, with all the above services is the best possible option, and in some units it is. But while there are kids like mine, who do need 100% full time comprehensive ABA being placed in the 6-1 units, this will not always be the case.
Because for every 6 kids with Autism in a special unit, perhaps 3 will have higher needs and challenging behaviours.
Placed with Tutors and supervisors with third level degrees in Psychology and Masters in Behavioural Analysis, these kids can over come these challenges and begin to learn at much the same pace as their higher functioning peers. Placed with teachers with limited training and limited support, and no ongoing consultancy or supervision or trained assistance, They Won't.
Instead in every class of 6 kids you will have at least 3 who are popping and rocking and disrupting and not progressing. They will take up all the energy of the teacher and assistants in managing their behaviours. And the 3 kids who could learn in a small group, who could benefit from contact with their peers, who could develop social and life skills and follow the national curriculum with their teacher, will suffer.
It is not fair to them or their parents. Every child deserves the chance to make the most of their education, and the kids who get an assessment recommending that they be in a small class with the chance to socialise with "their peers" have as much right as those kids who need a more intense intervention.

Don't let these kids and their parents down by trying to mush everyone together with a bit of this and a bit of that. Give each child a chance to realise their full potential.

xx

Comments

herself said…
Hi Hammie, It was very encouraging to read your discussion about the children who do not require ABA. You are correct that there is often a difficult mix in the mainstream units. Despite the lack of supports for the teachers and aids (insufficient training, what amounts to no appropriate support from psychologists and very spotty speech/language and ot support) many of these students do manage to move into the mainstream. Having the children on site with typically-developing peers is very, very important to help them reach their potential. I get the impression from you that you feel children who are "lower functioning," or have behaviour issues require only ABA, but I have to disagree there. I believe that sensory integration therapy and communication therapy (speech and language therapy in a play/interactive setting where the child is an equal partner to the interactions) should probably be the first choice or at least equally balanced with the discrete trial training that is the bulk of ABA training I have seen in Ireland.
Hammie said…
Hello Herself, thankyou for your comment. As I have stated in my blog heading I am writing from personal bias and I would like to offer a few facts from the road I have been on. My kids have attended a special autism school run on the 6-1 model that the minister prefers. We have had something approaching a clinical team for less than half that time. Each of our excellent therapists work with twice the number of clients that international best practice reccommends. But they are brilliant and at least in my house their consultancy on the kid's programs have made a difference.

This is not the case across the school and I have found myself (and the therapists) extremely frustrated to find that recommendations have not been followed through as a result of staffing issues. Enough said.

Another fact. In the 6 years that my kids have attended this school, less than 3 of the 31 children have successfully transitioned to mainstream. There are currently 6 children involved in part time inclusion with varying degrees of success. The stumbling block for any parent considering going "full time" is access to ongoing clinical support. Even if the child can cope with being in a mainstream classroom, their families cannot cope without the assistance of speech, occupational and behavioural therapists. There is currently no obligation for the Health Board to provide this assistance to children with autism who are "outside the service". And these children are disqualified from receiving community based clinical services, by virtue of having a diagnosis of autism.

You use the term "lower functioning" and refer to "behaviour issues". While I dislike the term "Higher functioning" I used it as a recognised diagnosis given to describe what point on the "spectrum" that some kids find themselves.
I do not accept that the kids outside of this are "lower functioning" but merely have different, and in some cases Higher NEEDS. And it is not all about behaviour. Kids with higher needs can just have a different pick and mix of symptoms that can make them Harder to TEACH. They have the same ability to LEARN.
(I am not using capitals to lecture you!, just to emphasise the difference to anyone reading our discourse)
Some kids with autism are auditory learners, they can pick up stuff from songs on their videos, they can repeat little phrases their parents and siblings use, and in a small group with good staff, they will follow the lesson as presented.
Some kids are visual learners. They are just as intelligent and will often be bizarrely early readers (my own son learned by 3)but imitation and speech will be a lot more difficult.
With structured individual teaching using visual supports these kids can learn, and once they have mastered a concept, can learn in a small group, but will always need to be taught NEW skills individually.
These kids are the ones who get the reccommendation for full time ABA, at least to begin with.

The last point I should make is that in the 7 years that the Full time ABA schools have been running, the curriculum has changed a lot. You are right, at the beginning it was very Lovaas and discrete trial oriented. But as the "movement" grew the schools began to consult with different experts such as Vincent Carbone who advocates Natural Environment teaching, and to incorporate the consultancy of Speech and Occupational therapists. One group had to break away from their parent school to do this, but the outcome for kids who attend the new and improved model, has been excellent.

I was visiting one of the original schools recently and these guys would have been all about the stop watches and graphs back in 2002. What I saw in the classroom was kids "working" on play skills, turn taking with peers in a board game and life skills like cookery, in a structured ABA setting. The tutors still had to fill in data at the end of each session, ensuring the task analyis was working, but I didnt hear a single "Beep" of a stop clock while I was there. All the tutors were supervised and coached where neccessary to ensure the integrity of the lessons.
I saw a lot of FUNCTIONAL communication, kids using picture exchange to request needs and I ran home and improved my own program as a result. And speaking of home; This school had a spare room that used to be an office. Too small to be a classroom, they had squeezed in a sofa and a tv/video. Recreational room? No. It was the room where they took kids to practice social language. Sitting on the couch with a tutor they were ensuring that the ability to answer questions at the table top was being replicated in a relaxed and "home like" setting.

As for mainstreaming? These schools maintain the national average of around 50 %. But the children who "leave" maintain a link with the school, which offers ongoing consultancy and support to the mainstream schools and the families of the children that have "graduated".

I am really glad you spoke up about how you felt about my post, and I hope I have answered some of your queries.
I agree, with sensory integration and good management of clinical input, the state model outreach schools could reach more of the children that attend them, more of the time. But at the moment they don't. And the kids shouldn't have to wait until they do.

And as I said at the beginning I am talking from personal bias. My kids have attended the state model for 6 years and it has failed them. I have 2 kids with intense needs, Yes, but they also have a lot of skills which can be analysed to help them learn, and after 6 years I think they should have the chance to do that.

thanks again for getting in touch
xx
herself said…
Hi Hammie, I am happy to hear that there are schools in Ireland that have moved past the discrete trial training stage, but I have not been so fortunate to have seen them. I have been in three ABA schools in three different counties, and was not happy with what I saw. That does not mean they were bad schools, since I only spent a day in each and I was looking at how they were serving my clients, so it was a very subjective view. My experience working as a speech/language pathologist in four units attached to mainstream schools has been very different from yours. All credit for what I have seen in these schools goes to the principals in these schools and the exceptional teachers and assistants. I have seen 13 students transition to mainstream successfully in just the past year. The child/adult ratio is closer to 1/1 in these classrooms. I am assuming that you are using the 6/1 with 1 being a teacher. I believe that excluding the support staff from the ratio is demeaning to the very talented and dedicated staff I have come across in my work. That being said, I do not think the Department of Education is providing the appropriate supports, training, and facilities for the teachers and their staff.

With respect to the labels of high functioning, Aspergers, classic etc. they are meaningless and inappropriate labels that are not helpful for prognosis of outcome. My son was mislabeled several times and was given an IQ of 65 at age 3. We moved here from the US when he was 13 and he went into his junior cert year with no supports except his mother and younger brother and he is now in third level in an honours programme, again with no supports. His diagnosis and IQ were not predictive of the outcome. Peter Vemeulen, a Belgian expert on autism, has research data to back up the lack of predictive value of type of diagnosis or IQ (or method of intervention for that matter)to positive outcome in adulthood.

I agree that the HSE is in disarray and find the politicking between the HSE and Education counterproductive. I hope that the current negotiations bring some benefits to the children, but am less optimistic than I would like to be. We can just wait and see and do our best for them in the meantime.
Anonymous said…
Hi Lisa,

I'm thrilled to see this blog! I'm a mother of a teenage boy with autism and I've written a book on the experience of mothering children with special needs in Ireland. (see www.jkp.com and look under my name Anna Karin Kingston)

More importantly, I believe in empowered mothering/activism and that we can change things if we get together. Check www.armi.ie !

I would love to hear from you!

All the best,
Anna
email: kajsa@iol.ie
valmodonov said…
Hi Hammie,

Yet another well written piece. Well done. I FULLY support the stance that children who have been recommended ABA should receive it. It's a SPECTRUM disorder so different strokes for different folks. Minister Hanifin gets that but doesn't get that you can't just get "a bit of ABA" each day as part of her recommended models.

As regards Higher Functioning children with ASD (which describes my 8 year old)how can it be right to educate him in a state special school WITH clinical support, integrate him VERY successfully into mainstream school and then discharge him to.....oh yeah that's right, there ISN't actually anywhere to discharge him too. Well not anywhere that provides MULTI DISCIPLINIARY clinical support. Ok...so we'll reassess him and probably find he no longer has ASD so then we can send him to local community services (Yeay a cure at last!!). We can always SAY he doesn't have ASD but needs behavioural support with angry outbursts and social languge skills training i.e. ASD but we won't call it that!! But guess what, even if they do that the local community services (our local one anyway) does NOT provide those therapies.

Now I know I'm being a little bit cynical but I do know how the clinical team that we're attached to works so, I'm surmising that this is what they're at. They probably even think they would be "helping" us. Either way they're going to pass him on to a service that CANNOT provide what he needs. This I DO know for a fact. So you can see ( and I know that YOU do!!)that all of us parents of these wonderful children have a fight on our hands no matter how well our child is doing. Personally it feels like we're being punished, to be honest.

Your previous article re: "Normal" was great to read also. I think you are extremely generous to consider ALL of the children, wherever they may be, on the spectrum in both your ABA and "normal" article.

As for us our "normal" has become very normal indeed, albeit a little "odd" at times. As a result I sometimes actually feel guilty to discuss my child's needs AND successes to someone who has it "harder" then me. So I really appreciated both articles.

Well done again...and YEAY I finally posted on your blog!! Been meaning to for ages!xxv
Hammie said…
Thanks Valmo
I actually think that you guys with more than a toe in the land of normal have it harder; because of the expectations. Not just the outside worlds but your own and when your bubba is more grown up; his. I guess the focus then moves to managing anxiety and that is another whole bag of tricks for you Supermum!
And never be reticent about celebrating your son's achievements with me; I know how hard it was for you to get there.
Welcome to the comments page, "please come again"
xx
valmodonov said…
Thanks Hammie. there'll be no stopping me posting now!

I guess it's just a "different" hard for all of us. And it's never you or the person I'm talking to that makes me feel guilty, it's me. I suppose we're all very aware of each other's situation and we strive to be mindfull of what we say. That's good too I suppose 'cos then we can get on board and fight for each other's causes. Those of us whose children don't need ABA will help those who do fight for it and I'm sure if a fight begins for mainstream supports we'll have a big gang behind us! it makes us stronger as a group.xx
Hammie said…
Sure that is my next fight. What else will I do when I win this one?
xx
Anonymous said…
Hi Hammie
Yet another corker! I would still consider myself new to the world of ASD having got ds diagnosis last July. What a rollercoaster of a few months it has been.

I would always have considered him 'mild' by virtue of the fact that as you say he was toilet trained easily and while going through the process on his potty he learned the alphabet forward and backward from the mat his potty was on. He has great appetite and can use spoon fork no problem. He sleeps well, loves to brush his teeth, loves the shower, hates getting his nails or hair cut. He has no problem stripping off but needs help getting his top on. He can say hello and answer 'Well' when asked how he is. This makes it hard for others to believe anything is wrong with him. He did not interact with his siblings until very recently and is beginning to allow the kids in playschool stand beside him and play.

He has overcome so much but there is a long way to go. We are sending him to school in Sept and he has just done a cognitive assessment for this. There were parts he did very well and parts he was absolutely rubbish at so I couldn't tell which way it was going to go. End result his recommendation was that he attend regular JI class with full time SNA who has experience in Autism. How anyone could come to that conclusion from reading the report is a puzzler to me. I had an idea this was going to be the case and have looked into the outreach option. While I believe outreach would serve him better in the end he will be mainstreamed so I have deciede to go with the recommendation and start him off there. if at any point he is struggling I will have no hesitation taking him out although I do believe he will do ok. The principal and teacher are so keen to get everything ready for him and want everything in place for September. There is only one other child in the school with a SNA and my ds will be in the same room with his sister, so that can only help (she is a mini me and talks to him the way I do).

ABA is not and has never been an option for us as we have no access to it, even when looking for Home Tutor couldn't get one with ABA.

From what I read about ABA every child can gain from it whatever the severity or degree of impairment. But I do believe that some children NEED it more than others and these children absolutely without question should be entitled to it.

Like Valmodonov I used to feel guitly reading some posts as others have it so much harder than me but realised that no two cases are the same and all these kids are on the spectrum and where on that scale they are doesn't matter. We are all in the same boat with our own individual problems. And if one of us has a problem we all fight to fix the problem. And although my ds doesn't need ABA i have no problem standing along all those whose child does need it and fighting with them.

Anyway that's it hope I haven't gone off track as I usually do. Thank you for this blog as with them all it is a great read. Start phoning the publishers.

Sesame

dunno what I'm doin wrong with identity options sorry if this has come up 3 times will send as anonymous but you know its me
Hammie said…
Hi Sesame, I think you need a google account to set up identity options, but yes; I know it's you!

I think you are going the right way with the plans for September. Having teacher and principal on board is 90% of the battle and if they are prepared to make it work, you are on to a good thing.

With regard to future planning. Keep in touch with the principal and if the class sizes issue comes up, perhaps you can suggest the outreach option. Schools which take on outreach classess are entitled to a walking principal (principal does not have to teach) and by virtue of that they get an extra teacher. The outreach class will be eligible for clinical support; they may have to apply for a stipend per child which can be used to access private services like Release Speech Therapy, or the Autism Services may actually appoint some therapists to the role.
By being attached to a unit the kids attempting mainstream and their parents will always have access to this clinical support, as and when they need it.
And as I said, I think our next fight is to ensure that the Health Service takes responsibility for these kids. Either that or we campaign for the Minister for Children to be allocated the entire Autism Budget; and to take control. They really couldnt do a worse job than the "unified" health service.

Thanks for the compliments, stay in touch!!
xx

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