Autism Specialists: Where Are They?

As soon as I got a suspicion I might have autism, I read up on it as much as possible. I was surprised, and also delighted, to learn so many new things about the disorder, but also a bit baffled I did not have this knowledge yet, being a doctor myself.

Learning about the sensory issues, the meltdowns and the shutdowns was  a real ‘treat’, finally I could understand what I was experiencing for so long, but could not really describe properly. Especially the meltdowns I started experiencing were very hard to understand. I wondered what was going on with me. Was I turning into a person with a borderline personality? Why did I start throwing things around? Why did I seem to get overloaded and unable to process any information?

Like I said, reading about it was very helpful. And I think it’s good newly diagnosed people with autism get education about their disorder. I can highly recommend to read as much about it as possible, because aggregating information is a way of getting control of your life. And we love control! We need it desperately, to function.

But after reading everything I could possible find, I was quite surprised to find out I have become more of an expert in autism than the people who are guiding and treating me. I haven’t been able to locate just one psychiatrist who specializes in high-functioning female adults with autism. I did find a centre who could diagnose me, specialized in women, though. But that’s quite new, and they did not have a psychiatrist.

I am telling the people, who are helping and treating me, what meltdowns and shutdowns are. How debilitating the sensory issues are. It feels quite strange to be ‘the expert in the room’, since I am being a patient.

This lack of knowledge worries me. An acquaintance of mine used to work with disabled children. Some of them were autistic. When they had a meltdown, she was instructed to ‘talk to them to calm them down’. Wow, this is so worrisome! Everyone who ever had an autistic meltdown knows this is the LAST thing you should do. Since there is a mental/sensory overload, you need to stop the input. Which means, get the person away from any sensory input, if possible. If this is how institutionalized children are being treated, well, we have still got a looooooong way to go.

Another example. I just read a blog of a Dutch pediatrician, about a child with autism. It is an interesting blog. A child with autism gets more and more disturbed behavior. The parents go to the doctor, and he is testing the child for every physical issue a young child could have. Results: none. From what I am reading, his behavior was being caused by meltdowns, especially during transitions, when he doesn’t know what is going to happen, which stresses him out a lot. The parents come up with a plan. During showering, they sing a song with the boy to announce the end of the showering, and the start of the other bathroom routines. It works, and the boy calms down during this transition. But then, a new problem arises. The people who are dealing with the boy in daycare, start singing this sung when he gets very angry and upset (to me, this seem to be meltdowns), and this of course does NOT work.

Again, a story that worries me because no-one in this story, seems to know what this child is experiencing and how to deal with it. Luckily the parents find a great way to deal with transitions, in order to prevent meltdowns. But both the pediatrician and the people in the daycare do not seem to have a clue what overloading en having a meltdown entails.

I just really hope to be able to spread some knowledge about autism, and all its related problems. I can not blame people for not knowing, and I am sure everyone who is trying to help people with autism, is doing and trying this in the best way possible. I am just shocked about the lack of knowledge about all our problems. I hope I can vocalise them to a large community, so people can understand more about the behavior, of people like us, who just seem to experience the world in a somewhat other way.

2 comments / Add your comment below

  1. Helaas kan ik je alleen maar gelijk geven. Ondanks alle goede bedoelingen is duidelijk merkbaar bij de ‘specialisten’ dat het voor hen toch vaak neer komt op een soort trial and error methode. Wat enigszins hielp, is dat ik m.b.t. mijn kinderen met één van de behandelaars dusdanig goed door de bocht kon, dat het een overleg werd. Dat gaf haar weer inzichten en soms kon zij met een andere invalshoek komen. Dat werkte in ieder geval redelijk. Onlangs nog een hulpverlener weg gestuurd. Lief mens, maar werkelijk geen idee over de aanpak. Wèl een specialist… Ik voelde me opgelaten in haar struggle om iets voor elkaar te krijgen.
    Nu ik zelf in onderzoek ben, loop ik weer tegen mijn eigen verwachtingen aan. Je denkt, hóópt vooral dat er iemand zit die jou nu eens nog iets nieuws gaat vertellen. Iets waar je nog niet aan hebt gedacht. Het leidt eigenlijk altijd tot een soort verzuchtend ‘wat had je dan verwacht’ gevoel. Natuurlijk begrijp ik heel goed dat de een de ander niet is, maar daar zit hem denk ik ook juist (!) de crux.
    Het blijft toch een soort reddeloos gevoel geven. Er zou zoveel meer kunnen worden geput uit ervaringsdeskundigen. En dan nóg blijft het zoeken en bijstellen, maar ik vermoed dat het in ieder geval een stuk dichter bij het gevoel van echt geholpen worden komt.

  2. Heel herkenbaar weer, ik zie het ook gebeuren. De hoop dat iemand je iets nieuws gaat vertellen, maar dat dat dan niet gebeurt. Ik heb 13 weken psycho-educatie gevolgd, 2 uur per week, en heb nog steeds niet het gevoel alsof iemand me daar iets nieuws verteld heeft. Het was fijn om met andere autistische mensen in gesprek te zijn over hun ervaringen, maar aangezien er vooral mannen in de groep waren, was weer veel niet herkenbaar. We kregen ook een artikel van Annelies Spek uitgereikt, dat ik al eerder gelezen had. Ik heb nu wel een psychiater die gespecialiseerd is in autisme, maar niet specifiek bij vrouwen. Er blijft toch een hoop onbegrip.

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