Two insulting meetings about “Gubby’s” assumed Autism: Part 1

While the children headed for school, Thursday the 10 April, “Gubby” and I headed for pre-school. He, to make Easter ornaments and do pre-school things, and me to sit in a meeting with Special Education teacher L. from BUP. During the short meeting with her and the psychologist at BUP, when they gave “Gubby” his “sentence”, they said next thing would be a meeting at the pre-school, in order for L. to explain to the personnel what “Gubby” needs. She demanded that the headmaster, over the Montessori school and pre-schools, be there in order for the personnel to understand how serious this diagnosis is. So, I got to meet D., the headmaster for the first time. He walked in and so did the Special Education teacher from the school, who in previous years have turned up to pre-school Wednesdays, every three weeks, to help children with problems. She explained that she is burned out, so she can not be in rooms with lots of noise and such, which means, she has not been to the pre-school since last spring. But she came since she will need to help “Gubby”, during his extra year at pre-school. A couple of hours every third week, as before. Not a whole lot in other words.

The other people present were of course the head of the pre-school, K., the teacher M., who sat down with us, after L. had observed “Gubby” for an hour, to help describe “Gubby” to her. And of course myself. I am glad I told T. not to bother with this meeting. It was so pointless and a complete waste of time. I am sure the headmaster drove off to the school swearing and saying to himself and the Special Ed. Teacher E., that it was a complete waste of a morning.

We all sat down, expecting L. to give us ideas on how to help “Gubby”, but that is the last thing she gave us. As a matter of fact, I started to wonder at this clearly Autistic woman. She really must have some sort of alternative intelligence?! Who shows up to a very important meeting completely without notes, completely unprepared? Well, this woman I guess is so used to giving these presentations that she does it all by heart. The problem is, that most children diagnosed with Autism in the year 2014, do not really fit the pattern of classic Autism, anymore. They are all very, very individually different and therefore, it is very important that they get the help that they need, not what the majority need nor what the classic cases of Autism need. You have to look at the individual child and make up a specific program for that specific child and his needs, not the needs in general. But this narrow-minded person sat there and gave us a description of the classic sort of Autistic child. She said that “Gubby” lacks the ability of social interaction. Pillar one in Autism. K., the head at the pre-school, raised her eye-brows and her eyes went bigger and bigger when she heard what was being said. She made eye-contact with me and we could read each other’s minds perfectly. What our minds said was “this is a bunch of nonsense”. L. continued to say that he lacks the ability to communicate and that his interests are limited and he gets stuck on things. Pillar two and three, in other words.

The day before this meeting, after watching the wonderful Israeli series of “Shtisel”, I got to see the end of part four of eight, in a series about Autism. I have missed that this was being broadcast and I only got to see about max ten minutes. What this woman said, an expert on Autism and herself having Asperger’s, was the following which really stuck with me (my words now, not hers verbatim, but the same meaning): The diagnosis for Autism was not set by God. It is created by man. Man has sat down and decided that if you do this and this, you are autistic. That is how they have decided on the three pillars. But rarely do you have a child who fits in perfectly. But you do push them in to the diagnosis. It must fit. Even if a child just have a portion of Autism, a portion of ADHD, a portion of Asperger’s, a portion of Tourette’s. But truth is, that IF we human beings were more tolerant and accepted that not all human beings are alike, then we would not need a diagnosis. IF we were more tolerant and took the time, then we would see what each individual need in the form of help and support. It would come natural. It does if one takes the time to use common sense. BUT today you have to get a diagnosis to receive any kind of help and the diagnosis of Autism is just an umbrella for different problems.

I totally agree with her in many ways. But I will get back to that. L. continued with her memorized agenda. Autistic children have a different way of thinking, they do not see the full picture and get caught in details. They stumble and fall all the time. Once again, K. and I just shook our heads inwardly. It was now my turn to say something and I was supposed to tell everyone what I think about his diagnosis. I said exactly what I think: I do not recognise my son in the typical Autism description. Sure, his speech is late, but it has exploded over the past few months and the more he speaks, the easier he has to get involved with other people. So much has happened in his development which clearly has me wondering about the diagnosis. The head of the pre-school nodded her head as did M. the teacher. K. explained to everyone that most of his problems have a foundation in his language problems. But L. was like a horse with blinds on. Our comments just gave her the fuel to get back to her topic of him not understanding language, that it is confusing to him, so he needs pictures for everything. She told the teachers that he needs pictures in order to sit still and complete a task and he needs a schedule on the wall with pictures of what he is going to do that day. That he can not handle change or chaos of not knowing what is going to happen. I wanted to rip my hair at this point. I decided not to say anything but just let the stupid idiot say her things and then we will do what we want to do. He has no problems handling change at all. He is not like the Autistic child who sits and hits his head or bangs his head in the wall when he can’t handle things. I told K. after the meeting, when we had our own meeting, that he asks me every morning “are we going on an excursion today”, because he loves the change, he loves going on  excursions with the other children, to one of the village playgrounds, having a thermos with hot cocoa with him and some “skånska pepparkakor” (Soft, thick gingersnaps from our province Skåne: less sugar, less calories, less fat and often eaten with cheese but good as they are all naturelle) to nibble on. (They are not allowed to have too much with them since they are going back to the pre-school to have lunch, right afterwards. They are not allowed to eat sugar things. So I pick this snack food, since bananas get bruised, he doesn’t like apples that much, he gets too full on sandwhiches…) He gets disappointed for two seconds when I say no, but is happy with my answer “not today sweetheart, but the…, then you will have a picnic”. Next he says “are we going to a theatre?”. The second best thing. And yes, he gets disappointed when I say no to this as well, since he loves to go to this. He gets involved with what he sees and often interacts with the actors, according to the teachers. But he handles a no fine, gets dressed and heads off to pre-school no problem. Even if nothing exciting is going to happen that day.

So, so much for not being able to handle change. He loves it! He is the one child who handles traveling the best and coming to new places and activities! K. informed L. that the pre-school has been setting up a picture schedule for him for over a year now, which surprised L. greatly, but K. added that he liked it for a while and then he didn’t need it anymore. He knows what the routines are and can come up with own ideas what he wants to do. K. said he comes and asks “may I do this?”. L. immediately said, yes because he feels unsure and needs affirmation. K. said, not really. He knows that he has to have a presentation of a material, before he is allowed to use it. That is how Montessori works. Material that has been presented to him, he knows that he is allowed to use and work with.

In the referral to habilitation, it said that he had undergone an IQ test and that he was well able to solve the practical things but the language put a stop to a lot of the language testing. There is no doubt in my mind or anyone else’s that he is a very clever little boy. But when the headmaster D. asked about his intelligence level, this stupid, stupid woman said “I can’t really remember but it is very,very low and it will have to be tested again!”. Where on earth did she get this from? Once again K. and I looked at each other with gigantic owl eyes!

M. soon needed to go down to the children, since they were short of staff, but he really wanted to say something about “Gubby”, so he told L. that he is doing more and more things with the other children. That he goes up to other children and asks them if they want to boil pasta with him or whatever. Those tasks have to be done two and two. And the other children, who has previously ignored him, say yes. He can get a little bit upset when he is told that he is not allowed to fry eggs just then or boil pasta. But he handles it well, when he is told why he can’t do it right then. M. and the rest of us, except L., of course, felt like this is normal for a child. To object to a no but accept it when told the reason. She just wants to see the devil in all things, while we see the normal actions. And she does not want to hear from anyone, that he is for the most part, just like everybody else. In that program, which I only saw ten minutes of, they said that all humans have autistic features!!!

Next insane thing L. came up with, was “when things go overboard, when he looses it. Then he needs pictures to look at, to see what went wrong and what he should have done instead”. We tried to explain to the idiot, that he doesn’t loose it!. He is not an aggressive child. He doesn’t go bananas when things don’t go his way. Fine, all other autistic children might do this. But he does not! It just shows how little this woman understands my child, how little she has come to know him. This is not an aggressive child. He doesn’t get hysterical. He doesn’t get angry like his ADHD brother. She really is crap at her job. She clearly did not get to know him well enough to give him any kind of diagnosis. I am so glad I never have to meet this woman again and I really would like to send a formal complaint to her employer. But what good would it do???

K. told the group how they try to train him in taking turns, which works very well. And that we all try to not fill in his sentences, but let him ask for help or we help him to help himself. All of us are happy with the decision that he will stay another year, since he is so happy and secure at the pre-school. It makes it easier to continue helping him with methods that are already working well. The pre-school is already doing a lot of things to help him, like with flannel stories and E. the special ed teacher from Montessori, suggested that I make photo books and stories about everything he does. That he will enjoy doing them with me. I guess there are apps for it, which she will show me this autumn, when she goes back to work properly.

K. explained as well, how they try to help him socialize with other children and how it is getting better and better thanks to his language getting better. L. still pointed out that he needs help in situations of free play. I have never seen him having problems with having something do to though. But I guess entertaining oneself doesn’t count as doing free play. Even if he loves to run. What is really wrong with that if you don’t hurt anyone? Maybe he will run marathons one day? Or win sprinter competitions? We might have an Olympic runner here!

I informed the group of how I had planned on visiting the Autism school in the neighbour village, since I want him to attend a school where people understand him and where he doesn’t run the risk of getting bullied because he is different, trusting and sweet. But unfortunately, I am not at all impressed so far, with the school. They do not answer their telephone nor do they answer e-mails. We have sent them plenty and tried to ring them. D., the headmaster, told me that he would try to reach them “the back way” and tell them that I really want contact. The next day, we just got an e-mail message, that they have put us up in their queue. Excuse me, but I wanted to visit before I took that decision. But fine. I am in queue now, even if they already have the 14 children which there is room for. They do not have room for more. But I really would have liked to have talked to them. I tried phoning the entire next day, but noone answered. I wish I had the headmaster’s secret number to them! Finally I wrote a new e-mail, but still no answer to that.

When everyone had left, K. and I sat down, to discuss what we had just been through. We both agreed it was a bunch of crap and she felt angry because L. gave her nothing at all to work with. She just sat there and described Autism in general terms, but not how to help “Gubby” in particular. She felt that L. doesn’t know him at all and was very narrow-minded, when she didn’t listen to what we tried to tell her. So, now both of us hope that habilitation will be able to give practical help, practical suggestions for how we can help him best. We both felt good riddance to not having to talk to L. anymore, who clearly had no interest in “Gubby” at all. I felt that it was the worse information meeting I have ever been to, since it wasn’t informative at all. She said nothing that pertained to “Gubby”, but no wonder, she hadn’t even prepared for the meeting.