I am a 22 year old female who has been diagnosed and undiagnosed over my lifetime with anxiety, learning disabilities, different types of autisms, etc. No one can seem to make up their minds WHAT I am. I know there is no clear labeling for a high-fuctioning autistic, but they've tried. I meet 5 or the criteria total from the 299.00 test. 6 or more gives you a diagnosis. That 6th one is up in the air because I have developed the ability to function in groups as an active participant instead of just a tool or a mechanical aid. This took from preschool to sophmore year of high school to get me into. I still have a hard time functioning in group efforts in my college classes, such as active group discussions and group labs. It could take me hours to understand what everyone is doing, but if I'm by myself with the same material, I finish/comprehend far beyond my classmates and faster. The absense of food dyes and preservative as well as caffiene have reduced my "ticks" ( motor mannerisms and preoccupation with parts of objects) .
My muscle spasms and uncontrolability of my right limbs have INCREASED though, to the suprise of my doctors. When I was younger all of these things were very subtle, but now for the past 4 years have been to progress and become more severe. Could this entire deal just be a mixture of several diagnostics, or is it really one problem? I feel like we need to look at everything seperatley instead of looking at it on a whiteboard as 'one big picture'. Any insight would be helpful.
Your difficulties as an adult are going to be quite common.
I had similar thoughts about my son. If you have a speech disorder, sensory integration disorder, auditory processing disorder etc that are separate diagnosis - do they add up to autism? I think my son is autistic because he does meet the criteria. There are some areas he does quite well at, and like you, if he improves he could well lose his diagnosis as well.
I don't understand why professionals are so black and white about things (sometimes I find them more autistic than my son!). As the DSM IV criteria says difficulties with social interaction. Your post does say that you have difficulties with group work. As autism is a spectrum condition that 'difficulty' can range from mild to severe. For you it is mild.
There is commonly this spiky profile with those on the spectrum where they can do some things well, but struggle with other things that are considered easier to do. There can be generalisation problems where skills can be learnt in one environment or one person but not in a different environment or with a different person.
I am also of the opinion that for many people that it is not a case of 'they can't' do these things (ie. in the diagnostic criteria), it is a case that they cannot process the information and make the connections either at all or in the time allowed. In a different environment my son can demonstrate a lot of skills that he cannot demonstrate at all in school.
With my son I have tried to identify the root of each difficulty - and most of them do lead back to, or are in common with autism. The professionals did not want to do these assessments because they said "we know that children on the spectrum typically have these types of difficulties". My point was, that if we don't know the root, we cannot make the appropriate approaches or supports available to my son. So my son has the following diagnosed:
Semantic Pragmatic Speech Disorder.
Disordered and delayed speech.
Auditory Processing Disorder
Auditory processing delays
Difficulties with Working Memory
Executive Function difficulties
Possible Dyslexia and Dyscalculia
Sensory Integration Disorder
Attention and focus problems
Autistic Spectrum Disorder
And, as you probably know, all the above difficulties are common in autistic spectrum disorders. But again, I could take out some of those disorders and add a couple of different ones in, and it would still add up to ASD.
So, it might be that you understand your difficulties as a 'whole' better under the umbrella diagnosis of autistic spectrum, or autistic traits etc - but that you also have each individual diagnosis as well to specify 'where' the difficulty is coming from. For example, if a child is not learning in school it could be down to many things ie. auditory processing, executive functions, memory retrieval, difficulties with demonstrating learning through dyspraxia of speech or thought, dyslexia, motor planning problems etc (which again are all common under the umbrella of ASD).
That helps me a lot. I'm glad I'm not alone. Why is it that just because a patient overcomes a personal challenge, they're automatically cured? I think what's so hard for doctors is the fact that autism has such a vast range of complexities into which they can't grasp. Those who can fuction with their autism are no better or less than kids who can't. I have a friend with aspergers and a girl I've known since 1st grade who is an autistic with minimal socio-interaction. We agree: Doctor's want to know what makes us tick. But when we are able to tell them, no one listens.
Yes it is very difficult, and frustrating at times. I read so many posts her by parents who have been told that their child cannot be autistic because they 'can make eye contact', or 'they show empathy'. My belief is that for many they do have those abilities, sometimes to a lesser degree, but that maybe for all kinds of reasons. For example my son understands theory of mind problems, lying, bluffing etc when he sees it on TV. I think that is because on TV everything is shown on the screen so you see and hear everything and can work it out. In real life it is much harder because the people are not all in the same room at the same time, and information may be received first, second or third hand etc. So I think it is something about the processing and the making connections between things that are particularly difficult.
I really don't understand why professionals don't listen to adults with autism and aspergers. There are some good professionals who will invite adult speakers who have autism/aspergers to speak to other professionals and parents.
In some ways I am fortunate because I also have Auditory Processing Disorder and some Sensory Differences. So I know what it is like to experience things differently to those around me. And in some ways that made it harder for me to see the 'autism' because my son is just a much more exaggerated version of myself.
I also lived abroad in Greece for 7 years, and until I learnt the language, I could see that alot of my own behaviour was 'autistic' simply because of the language difference. For example, when in a group of Greeks, it was impossible for me to concentrate on what they were saying for more than 5-10 minutes, especially if I didn't understand what they were saying. I would find myself drifting off and thinking about things. I would try to avoid those situations, preferring a one to one attempt at dialogue. I had problems with semantics and pragmatics because of the cultural differences and 'sayings' that they have.
I have tried right from the beginning to explain to my son that his experience is different to mine and other people. In that way I hope to help him begin to explain how things are for him. Because it must be quite strange for him to see that other people and children can do things that are difficult or even painful for him and I don't know if he has worked out that they experience things differently to him. It is very easy for children and adults to get low self esteem.
Anyway, nice to see you on the forum.
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