When I was researching language pragmatics for my recent echolalia and scripting post, I came across an IEP goal bank. For those of you who aren’t familiar with these terms, IEP stands for Individualized Education Plan, which is a personalized document that describes an educational program designed to meet the needs of a child who is enrolled in special education. It includes, among other things, information about current performance, annual goals, services, accommodations, and progress.
Presumably to make these unwieldy documents easier to create, there are databases (goal banks) of scripted goals and objectives (sub-tasks of goals). One can search the goal bank for items that can be inserted into a child’s IEP with a small amount of customization. Of course, I couldn’t resist digging through the databases to see what types of goals autistic children are being asked to meet.
It quickly became obvious to me that I, as a 45-year-old autistic adult, could not consistently meet many of the social and communication goals and objectives that autistic elementary school students are expected to achieve. As I kept digging, patterns began to emerge.
Here are some typical goals (with commentary on each to follow):
- Student will initiate varied appropriate topics with others 4/5 opportunities to do so.
- Student will monitor eye contact, body language, and tone of voice during conversation.
- When greeted by peers and adults the student will appropriately respond within 3 seconds.
- Given a verbal label of a category, student will begin to name 5 familiar items that belong to that category within 3 seconds.
- Given instruction, student will develop auditory processing of verbal material and direction following skills such that in order to function adequately in the classroom with decreasing amounts of assistance.
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Student will maintain eye contact [listed as the first objective in a list of objectives working toward a communication goal for a completely nonverbal student]
Let’s look at these individually to see why they’re problematic for most autistic people, not just the elementary school-aged kids for whom they’re intended.
#1 is clearly code for “don’t talk about special interests.” In looking through the goal banks I found a lot of coded language being used to camouflage goals meant to extinguish natural autistic behavior. For example, I also found, “Will engage in appropriate play activities 80% of the time across all settings.” I’ve seen this type of thing talked about enough by “experts” to know that pretending to have a tea party is appropriate and lining up Hot Wheels by color is inappropriate. Again, this is code for “look and act less autistic.”
For an autistic child (and many autistic adults), #2 is the equivalent of asking someone to ride a unicycle while juggling circular saw blades and breathing fire. You might have the concentration to do one or two of those things simultaneously, but doing all of them at once? Even if you can, you’ll have zero cognitive resources left for doing anything else. Like, say, enjoying the unicycle ride (or the conversation).
#3, with its ridiculous 3-second time limit, assumes that the child can somehow make their auditory processing issues, language production issues, and/or sensory processing difficulties disappear. All three can play a role in making it difficult to quickly and “appropriately” respond to unexpected greetings and all 3 could be accommodated in a way that makes social interaction less stressful.
I have no idea what the point of #4 is or what life skill this is teaching autistic children. Is there some significance to these 3-second rules? I can see this being a game that kids play to expand their language capacity and knowledge of the world, but is it necessary that it be done to a stopwatch?
In #5, the level of ignorance about how an auditory processing delay/difficulty works is staggering.Telling an autistic student to “develop auditory processing” to “function adequately in the classroom” is the equivalent of telling a blind student to “develop sight” so they can see the blackboard and no longer require accommodations for their disability. Is the child being expected to overcome a physical deficit by sheer force of will? Or maybe practice? There are specific steps that can be taken to mitigate an auditory processing disorder, but “develop auditory processing” isn’t one that has worked for me and I’ve got four decades of practice behind me. This is a terrific example of a goal to fix the child being used as a substitute for accommodations (i.e. medical vs. social model of disability).
Finally, why is #6 the first thing a completely nonverbal student is being asked to master? Looking at someone should not be prioritized over having a functional means of communication. Eye contact is a social signal that humans have learned to interpret as “I’m paying attention.” It’s also a social signal that many autistic people find uncomfortable and unnatural. Why not substitute an equally viable social signal that says “I’m paying attention”? There are many to choose from: nodding, signing, pointing to a picture or some other gesture might work for a nonspeaking child. For children comfortable with speech, a simple “got it” or “I understand” can play the same role as eye contact between teacher and student or parent and child. Making eye contact to acknowledge another person during a conversation isn’t some immutable universal law like gravity. We made it up, we can change it.
The goals that I listed above, and those like them, are a mix of unreasonable, misguided, biased, and just plain unhelpful. Sadly, I was able to find worse. Many of the social, communication and life skills goals/objectives in the databanks prioritize compliance.
For example:
- Student will show desire to please teacher or supervisor in 2 out of 4 opportunities.
- Student will smile in response to attention by adult.
- Student will maintain an appropriate vocal tone (not sharp or snappy) and facial expressions (not angry or disgusted with others).
- Student will follow rules in group games led by an older child.
- Student will cooperate with adult requests
- Student will tolerate tactile stimulation.
Teaching autistic children blanket rules like “cooperate with adult requests”, “always respond to adult attention with a smile” or “follow rules of an older child” is just plain dangerous. Especially when it’s combined with messages like “you aren’t entitled to have bodily autonomy (#6) or to express negative emotions (#3)”.
Why are these goals dangerous? Autistic kids aren’t good at negotiating social situations to begin with. They’re also very literal, take rules seriously, and often have trouble knowing when they should make an exception to a rule. Teaching them that they should always comply with an adult or older child is basically grooming them for potential abuse.
Identifying Unreasonable Goals
What makes a goal unreasonable? Here are some patterns that I identified:
- Unreasonable goals prioritize “normalization” or compliance over objectives that benefit the student (like having a means of communication).
- Unreasonable goals don’t recognize autistic body language and socialization preferences as valid.
- Unreasonable goals don’t acknowledge as a valid and accommodate the student’s areas of disability.
- Unreasonable goals demand more from a young student than the average autistic adult is capable of.
I’m sure there are more, but even applying those four tests would be a good start toward creating more useful and productive goals.
What are Reasonable Goals?
While discussing this on Tumblr, which is where I first posted my thoughts in a fit of pique, one person objected to my characterization of these types of goals as unreasonable. “But if you don’t tell autistic kids to always cooperate with adult requests, they’ll just run into the street and get hit by a bus!” they protested (I’m paraphrasing, but only a little).
Most people saw this for the obvious straw man argument that it is, but let me clearly spell out that I’m not saying we should let autistic kids run in front of buses or do other harmful things to themselves or others.
“Always comply with adults” teaches unquestioning compliance, even with potentially harmful-to-the-child demands.
“Never walk into the street by yourself” and other situation-specific rules teach children about potential dangers and how to avoid them.
Similarly, “tolerate tactile stimulation” takes away a child’s bodily autonomy and fails to acknowledge that sensory sensitivities are a real source of physical discomfort and/or pain.
“Here are the available clothing or personal grooming options, let’s find out which ones work best for you” gives a child control over their body and helps them learn how to manage sensory sensitivities, a skill they are going to need for the rest of their lives.
“You’re not allowed to express anger, disgust or impatience” teaches a child to suppress negative emotions to please others.
A better goal would be helping the child to identify their emotions and find safe, constructive ways to express them. This is especially important in light of how many autistic adults report being alexithymic to some degree.
I’m certainly not against IEPs or having goals or autistic kids learning social, communication and life skills. In fact, the IEP banks offered plenty of examples of goals that I thought were great, though most of the good ones were in the academic rather than social and communication categories. What I am against is goals that focus primarily on making kids less autistic or more compliant rather than equipping them with skills that are useful to them.
Musings of an Aspie 
This is horrendous…equally is a lot of the information on parenting autistic children…getting them to stop ‘stimming’ and to be able to hide ‘inappropriate’ behaviour. Very depressing…but this blog is not, keep up the good work and fighting the good fight.
Yes, exactly. I’ve been spending more time on Pinterest looking for useful things to share and so much of what I’m finding is just horrible, triggery, misguided and downright dangerous stuff. 😦
And the worst part is – a lot of parents out there are going against their instincts because they do what the professionals tell them to.
TW: ABUSE
Okay.
I am disgusted with those IEP goals.
And this reminds me of an article I read today:
In a bigger town in Germany, a school bus for mentally disabled kids was inspected, and it turned out that all but fourhad been BOUND TO THEIR SEATS with TENSION BELTS – locked on the back of the seat, so no way of getting out even in an accident – to accomodate the fact they all had to be buckled up.
The police tore the bus driver and his assistant a new one, and that should have been the end of it, but no, the next day, the SAME PERSONNEL did the EXACT SAME THING.
They are now being investigated to see if they should be sued for abuse.
Well, I’d prefer to strap them to their seats and drive the bus through the curviest streets and most horrible cobble stone I could find, but okay.
The problem – there are people in the comment section who are saying “well, that’s not exactly okay, but what are they supposed to do if one of the kids gets out, maybe they were just desperate?”
And “Well, it’s of course not okay, but to sue? I think that’s overkill”
Too ragey to come up with anything reasonable right now.
Yeah, I understand your too rage to comment feelings. It took me a month to get to a move civil place where I could write something was just “nope, uh uh, no way” in response to the goal list.
I put a trigger warning at the top of your comment for anyone who might be triggered by reading the description of the abuse you included. I don’t think I’ve ever edited a comment without asking but since you’re at the top here, it’s likely that a lot of people will read your comment and I want people to feel safe. Hope that’s okay.
That’s absolutely okay – I should have put it in myself, in fact.
Thank you SO MUCH for this post!. Teaching compliance is not only deeply dehumanizing, but dangerous and this connection can’t be made too often. Another reason not to teach compliance is that by doing so, you’re in many ways disabling the person from engaging in genuine relationship with other people. True relationship is never based in compliance. Your other points – about the ridiculous pressure on impossible goals – are also right on target. How many people pressured to practice “appropriate responses” within the 3-second margin are later accused of being liars and dishonest, because their 3-second answer wasn’t really connected to their genuine communication? (My own answer, developed over years and years of observation: a lot.)
You are so right about the impact of this training on later relationships – I had not even taken that into account.
Now I am getting even more angry at the “professionals” who developed those ideas.
I have another post in mind specifically about why these kinds of things are dehumanizing because it seems like a lot of people don’t make that connection. So thank you for bringing that up here.
Also, wow, what you say about time pressure trapping a person into choosing between not complying or not giving a true answer is so spot on.
I have an awful habit, or maybe a reflex, of answering a question with something I heard someone else say. I hate it because if it’s very different from what I really think or want it’s so hard to put right. I never do it deliberately or consciously and always feel bad after. It makes no sense to me but after reading this I wonder if it started as a coping strategy for keeping up with others in conversation or unexpected questions. I can remember it happening in early primary school.
It worries me that emphasising speed of communication could make children more likely to fall into unhelpful strategies like mine. I was never explicitly taught this but the pressure was there. Hopefully a good teacher would protect against this, but it must be a risk.
Quality of communication should be most important. Were there any goals relating to that?
It does sound like a coping strategy, something to fill the empty silent space while your brain catches up maybe. I chronically say ‘sorry?’ instead of just giving myself the extra few seconds that I need to process.
There were literally thousands of goals in the databanks and I do think there were goals related to quality and content. I wonder why the goals were so incongruent – terrible ones alongside useful ones. Perhaps the databases are indiscriminate collections culled from a large group of IEPs or the goals are submitted by users (or some other group of people). I probably should have added that they’re also moneymaking concerns so people are not only spreading this kind of misinformation but they’re profiting from it. 😦
Shoot, this is a terrible list even for normal children! Being polite and respectful is always preferred, but constant blank stares and unvarying obedience? That makes my skin crawl… Let’s go in the other direction with the straw man argument, “teaching blind obedience is how you get them to drink poisoned koolaid without question!” While either straw extreme are unlikely, they both should be avoided anyway and common ground should be sought. You can’t rule with an iron fist any more than you can have no rules whatsoever!
I like your improvised list better, that should be used for all kids, it’s more able to teach them to be mannerly while encouraging them to think for themselves. I’m already starting with my two-year-old. Little examples, hard rule to not touch a hot pot, but let him pick out what shirt or toy he wants to take with him when we go out.
I like your examples a lot. Teaching kids from a very young age to make small decisions and giving them the opportunity to do so is crucial to raising kids who make bigger harder decisions later in life.
As a social worker, I get SO FRUSTRATED by these kinds of meaningless goals for kids. Unfortunately, insurance companies and other authority structures are demanding that paperwork be submitted with goals like this — in therapy as well as in the schools. It is part of the process of trying to get autistic kids to look “normal”, rather than showing teachers, peers, and family how to be sensitive to the autistic differences. We have a lot of work to do to change this perspective.
I know what you mean about the red tape and how awful the system is set up to move everyone along this same track. It’s really sad that the status quo is so hellbent on normalization.
From my own experience, having made it the first 22 years of my life undiagnosed, I can still see how these are unrealistic! I think the only reason I look at people’s eyes is because as a small child, I wanted to know what colour everyone’s eyes were. But as soon as the topic gets personal or “scary” in any sense, I automatically find something else away from the person and study it with intense interest. It’s no wonder I spent most of my life in a constant state of anxiety! It would’ve been nice (maybe) to have been diagnosed while I was still in school, because, as you said, I also have quite severe alexthymia, so even if I did manage to realize I needed help and then, even rarer, managed to ask for it, I often couldn’t describe what exactly I was struggling with. All this was because of a perceived way to act “normal”. Since my diagnosis, while I can’t say the anxiety has entirely disappeared, I’ve learned when not to put unreasonable expectations on myself. I’ve tried for so long to fit in, but never really succeeded. Even when I thought I was passing so well, I’ve had close colleagues tell me they can’t figure out what’s wrong with me. So my new allowances for myself include: if my stim isn’t harmful to anyone, I’m allowed to do it, even if it “distracts” others (too bad. If I’m not allowed, I’m the one that’s distracted); if a situation is overwhelming, I’m allowed to look away; spending time alone in my room is okay, as long as I spend some time at least attempting to be social (though that usually consists of me sitting in public doing cross stitch, which gives me an excuse to not look at people). It’s funny you mentioned the first one. I’ve noticed that if someone else starts the topic, I can usually respond “appropriately”, even if it means interjecting some random fact here and there in the conversation. Starting a conversation myself, however, well, if they aren’t interested in Tolkien, medieval history, piano, or a few other of my special interests, it’s just not going to happen. So I’ve learned throughout my 23 years of life how to not come across as completely random and scary, but recently I’ve learned a bit more of how to balance that with my own needs so I don’t get overwhelmed and can be as productive as I can. NT expectations are simply unreasonable for me to adhere to all the time.
Great suggestion to use something like embroidery or cross stitch. I’ve not done it for a long time, when I was a kid, it would be a great way to “be” with people and still have my own space. Thanks!
It works quite well for me. There are times that I almost have panic attacks just listening to conversations, let alone participate, and I tried distracting myself by counting the flowers in a picture or something, but the cross stitch seems to be the most effective, or crochet or knitting, but my current project is cross stitch.
“Since my diagnosis, while I can’t say the anxiety has entirely disappeared, I’ve learned when not to put unreasonable expectations on myself. I’ve tried for so long to fit in, but never really succeeded. Even when I thought I was passing so well, I’ve had close colleagues tell me they can’t figure out what’s wrong with me.”
I could have written this about myself. Isn’t it amazing how much the permission to be yourself makes life better? I’ve seen my social anxiety go way down since deciding that it’s okay to be me and not try to fit some fictional social norm I’ve been carrying around in my head.
Your rules for yourself are great – it sounds like you’ve reached a good balance.
This is so distressing to me, it makes me feel ill. If I was subject to these so-called goals my response would be horrendous frustration, anger which likely I’d not be able to recognize or control, and either withdrawal or lashing out: the result of these imposed behavioral goals would’ve been utterly anti-social behavior on my part.
I don’t have the skills to fight these fights, not subjectively or objectively. But clearly the powers that be are so wrong as to be actionable in my opinion.
We need someone who’s not afraid to whack down a whole slew of hornet’s nests full of well paid “professionals”, then bravely and wisely lead what amounts to a campaign.
Perhaps change starts one trickle at a time…by sending this post to people you know who may read it, teams at schools ect…and then perhaps we could draft a petition…the majority of all we know who are Autistic on different blog sites to the main Autistic boards over the world ( England, States, Canada, Germany) with some other references, research and posts as well for further study and blogs written by adult Autistics like this one for them to develop understanding?
If I feel a post triggers me I will send it to people I know. It’s their choice to read it…but just the other day I sent Cynthia’s posts to my provincial Autism board in response to many well meaning emails trying to push kids to socialize. I was so nervous…but guess what? They emailed back asking if I would be willing to advise them via email…I have not heard from them since but it was a relief to know that most will listen if you sound like you know what you are talking about and back it up:) I’m willing to wack down a slew of hornets nest because I have an awesome support system at home…but in the bigger arenas we have to get a slew of Autistic voices and their NT supports to sign something bigger I think…
Cynthia: This post was needed but I can only imagine the pain and frustration it took to get through it! I felt immediately enraged. That’s abuse. Abuse disguised as education and it should not be permitted…despite the fact that it was well meaning. Some of the most atrocious crimes in history was from well intentioned souls who believed they were protecting humanity or doing their best to make the world what they believed it should be. But also through out history the advisors, the seers, those who think out of the box ect found ways to change harmful thoughts ect. Aspies tend to meet this criteria so I do believe this next century will see some positive change in this area…esp if we pass this type of info on to the NTs whom love us, petition and keep living and writing for awareness…most of all- making our lives matter wherever we are in the smaller scheme by living in love:) This blog is one of the most loving places I have been on the internet…and its not a fluffy type of love…in fact most on here are pretty logical, but its an accepting type of love that in turn gives respect. Thank you for being part of that:)
Good for you for speaking up, Kmarie! I do think there are a lot of people out there who are willing to listen or who might start to shift their perspective in response to hearing an autistic perspective on situations like the one you describe. We just have to keep talking, I suppose.
It took me weeks to get to a place to write this in a semi-rational way. There were much worse goals that I found (believe it or not) but there was no way I would share them here because they were so triggering and abusive (and really disturbingly specific). It seemed like the less communication a person has, the more likely they are to be subjected to dehumanizing “goals”.
Your last paragraph made me grin. What a terrific thing to say and it’s exactly how I feel about this space.
Would you be willing to put a link – with a big fat trigger warning – somewhere?
I have to admit, I am morbidly curious.
If you search IEP databank or IEP goals database, you can turn up the 2 largest databases. They both have lists of sample goals that you can view for free even though the services themselves are subscription based.
Yes! Please keep talking! I’m a Speech Language Pathologist and most of my students do not have the language abilities yet to explain what they are thinking or why something is wrong. So, I could continue to go on and guess what my students are thinking and feeling or I can rely on the experiences of others who actually know. I’d rather do the latter. 🙂 So glad I found your blog!
Your comment made me so happy. Thank you for listening. 🙂
“If I was subject to these so-called goals my response would be horrendous frustration, anger which likely I’d not be able to recognize or control, and either withdrawal or lashing out: the result of these imposed behavioral goals would’ve been utterly anti-social behavior on my part.”
And this seems to be exactly the response of so many autistic kids, who are then accused of “challenging behavior” and subjected to more intensive efforts to fix them, resulting in vicious cycle. Thank you for explaining this from a first-person POV.
I’ll be sending this to the team at my son’s school. They actually are very responsive (at least in my experience) to changes. They dropped the eye contact goal as soon as I told them I didn’t want it and why it was not good. Hopefully they don’t do this, but if they do, I hope they appreciate the autistic input and will do their best to adjust. Thanks for all you do!
It’s great that they’ve been so responsive to your requests. Your son is lucky to have you on his side. 🙂
I’m lucky to have YOU and the autistic community on my side. This kind of insight makes all the difference.
This makes my stomach turn, and saddens me too. These demands, and that’s what they are, are inhuman. I was never identified as a child and it is only now, at 53 that I will be going in for testing to confirm what I know in my heart. Trying to live up to these standards in an NT classroom, and in life has been so damn hard. I’m sure it’s why I have also been diagnosed with OCD, Anxiety, and Depression in the past few years. Just reading these demands makes my skin crawl. I was abused, by a neighbor, as well as a family member and I took what they said as very literal. Kids need to be able to say no, and have a clear sense of what is okay. Blanket statements to obey older children or adults does not work, period. Thank you for a great post.
What you mentioned about your OCD, anxiety and depression is actually a recognized phenomenon of secondary and tertiary conditions in autistic people due to the stresses of living in a world that demands all sorts of things from us that feel impossible and exhausting.
Thank you for being brave enough to share your personal experience. If anyone had any doubt about compliance-based goals grooming kids for abuse, I hope your story will shatter those doubts because there are so many other adults and kids who could tell a similar story and it needs to stop.
Your welcome. If my sharing helps someone else, as so many peoples stories here have helped me, I’m happy to share.
My husband had to learn the social skills along the way as when he was born there was no conception of AS. His mother patiently taught him. He does well in familiar places. But sometimes even then it is a problem for NT people. He was in the choir at our church for 8 years, and yet the choir director called him down for the third time this past Sunday for not making eye contact with him and he just gave up. They lost a wonderful bass singer.
My grandson has not be diagnosed, but I believe that he, too, is Autistic by his behaviors. Adults are constantly trying to make him behave “normally.” He is a very intelligent child (almost six years old) but people keep expecting him to react and act the way those IEPs expect children who are not Autistic. Fortunately, his Kindergarten teacher has captured his heart, and has the skills she needs to help him learn.
That IEP mess would be difficult for most NT kids at that age. As a teacher, I resent that kind of wholesale propaganda being practiced on our children. Thank you for this post.
It’s so sad that your husband quit choir. I can’t imagine what eye contact has to do with singing beautifully. 😦
I hope that you’ll be able to be there for your grandson as he gets older. It sounds like he’s found a wonderful teacher, but that might not be the case as he gets older. He may need an advocate in the family who is sensitive to what he’s experiencing and can gently steer others towards a different approach for him.
Thank you for the encouragement. I’ve already been talking to him about joining our community chorus together. I like to sing, too, but I perceived from the get-to that that church director was not safe for me.
My grandson and I get along well. I just let him decide how much he wants to interact at any time.
Interesting and good post as always. You may want to correct ‘bodily autonomy (#7)’ to ‘bodily autonomy (#6)’. Also in this type of posts, one needs to do lots of vertical scrolling to see the references when they are mentioned, it would make for easier reading if you were to comment after each item. (It’s much worse in the survey posts, but there are no easily solutions for these.)
That’s a challenging one for me too David. I have to scroll back and forth to connect the two lists in my head and then process them so that they make sense for me. Challenging at best, tiring most of the time. Sometimes exhausting.
Thank you – I fixed that. Good point about the structure – I went back and forth in trying to figure out which way would work best, but perhaps ended up choosing the least best arrangement.
Again, I am so glad I found this site earlier this week. My first post was in relation to sensory challenges and how I recognized myself (older post on the subject) and then this morning I read this one and posted (above). Thank you again for the work and energy that you place in making this an educational, empowering, supportive place for everyone who comes here, NT, AS, or anywhere in-between.
Who makes up this criteria for what it means to “fit in”. People who do not know what it means to live in an AS world.
Thank you to everyone who posts and responds to this blog. Day by day my anxiety is better. Though not gone, as someone else said, as I give myself permission to be me, Stims and all, I am more at ease.
Imposing these barbaric requirements on children or anyone with AS is asking for an increase in anxiety, depression, withdrawal, anger and more.
PK, KMarie, Bravo to you for reaching out to make a change, for your own families, and for ours. I think it does have to come from us, from those of us who can, to make changes.
I’m so glad you’ve discovered the blog and are getting so much out of it. I went through that same process of discovery and of letting myself be more and more me, so I know how exciting and a bit scary that is. 🙂
Thank you. It is a combination of scary and exciting, or maybe a better word is feeling like I am coming home to myself through all of the stories here that sound just like me. Hmmm, that may be a book title for me down the road. The scary part is that on the one hand I will finally have an answer, know that I am not at fault for something I should be able to fix or get over. I’ve been trying to fit in and or figure this out (back and forth) all of my life to this point. Seeking answers, bits an peices of the puzzle but still missing more than knowing. I had genetic testing last year to rule out Fragile thinking maybe that I was a carrier (it effects girls less severely than boys) because I have two brothers were developmental delays, one much more severly, the other slightly less so, and all of the boys (4 in total) have had challenges) and the test results came back negative. One the one hand I breathed a sigh of relief because I know our kids want kids down the road and it’s hard to think about having something that impacts them because I have passed it on. On the other, I just want an answer. I’ve managed, between encouragement from the new doctor I will be seeing for the testing, and myself to keep calling his office looking for any cancellations that come up, and between the two of us, I have gone from having an appointment on December 6th, to seeing him tomorrow for the initial appointment. I am nervous and want answers, don’t want it to be this (thinking of my kids again) yet so want it to be this so I will finally know – and afraid maybe it’s not this – so what is it – what if I fail his intake and its not this. Everything points to this. Maybe it’s weird to want to have this diagnosis. I just want answers and everything, from the AQ test to the Aspie Quiz, and everything I am reading, seeing of myself here and other places says, this is me. My husband said to me yesterday, I don’t want you to get your hopes and and think it is all this, and then it’s not, because other testing ruled out things we thought it might be. . . Sorry, long post and I know it’s because of tomorrow’s appointment. Thank you again for this amazing blog/community. It’s the best one I have found. ❤
Feel free to write as much as you like if it helps you cope with the anxiety in advance of tomorrow’s appointment. I was horribly nervous for weeks going to mine. And I don’t think it’s at all weird to seek out a diagnosis if it helps you understand yourself better. Best of luck with the appointment!
These are, of course, horrible goals, and I do not intend to defend them. They make me feel a little sick, honestly. But I’d like to speak up for the minority of SLPs, PTs, OTs, school teachers, and even ABA therapists who write goals like this on the IEP or on the insurance form but pursue a very different path in their treatment of children and their cooperation with parents. I speak from personal experience in the clinic setting. I saw a lot of insurance fraud, but wow I wish I saw more. If these goals are not listed clearly in all session notes (there’s a requirement for how may goals there should be, how specific they must be, how many of them need to be in certain ares like social or language or behavior management, how much progress toward the goal in percentage (!) there has to average each session) insurance companies, and more often Medicaid, can deem a child unqualified to receive funds for aid, and the therapist could lose their license if the issue is not addressed. The most exceptional therapists were willing to list goals like this – absurd, unnecessary, unrealistic goals with clear timeframes like “within three seconds” and “by two weeks from now” – but then pay them absolutely no heed in a session, and never mention these just-for-show goals to child or parent. This doesn’t make it ok that these types of goals are considered appropriate by insurers, by some parents, by many therapists, or by anyone, but there are good people out there working with kids who decide they’d rather help on an individual level what kids they can rather than call attention to the systemic flaws and risk losing their jobs and the ability to give their all for they kids they know and love personally.
You’re right, of course, there are many people who are boxed into this system and doing their best to subvert it while still getting funding and services to the kids they work with. But there are also a lot of people who think these are reasonable goals and are pushing autistic kids into serious physical and mental health crises in the name of therapy. I was actually going to draw some horrible conclusions about recent events, but I’ll stop here because I think anyone who is familiar with the situations can draw their own conclusions.
I appreciate your boots on the ground insight and I know this is a really personal issue for you. ❤
There are many people subverting the system yes, but they are the very slim minority. I would not want to minimize or dismiss how widespread a delusion it is that these are safe or reasonable goals, because that is certainly the prevailing attitude. Instead, I would say that if you find a therapist who is able to really connect with your child and who is not using this type of goal, first – hang onto them. Second – be aware that they are the exception and not the rule, and chances are they having to lie or risk their career to treat your kid they way they feel he or she deserves.
Although my 10-year-old is not Autistic, he does struggle with learning difficulties, anxiety, depression, and difficulties with motivation and EF. My heart breaks for him every day, as I have to help him through frequent meltdowns. The volume and level of work he receives is far to much for him, and the goals unrealistic. I will also share this post with his school. Thank you. Very insightful, as always.
I hope his school listens. Does he have an IEP? Or is that the problem?
He has one, but it does seem to have unreasonable goals.
Reblogged this on hessiafae's Blog.
Wow. This is scary, depressing and anger-provoking all in one. What century are we in?! Why is there this desperate need to conform and stick everyone into the same little box. And what is so special about eye contact? Like someone else said, there are plenty of other ways to show that you’re interested (or pretend that you’re interested!)
And if I’m monitoring eye contact, body language and tone of voice then I’m not going to be taking in what the other person is saying, let alone coming up with multiple topics of ‘appropriate’ conversation.
“And if I’m monitoring eye contact, body language and tone of voice then I’m not going to be taking in what the other person is saying, let alone coming up with multiple topics of ‘appropriate’ conversation.”
Oh gosh, I hadn’t even considered the possibility that one would have to achieve multiple goals at once. Silly autistic brain of mine.
I think it’s part of why I can set so damn uncomfortable in a situation, depending where I am at on the anxiety scale on that given day or in that moment. So many things coming at me about what is appropriate and when. I feel like I’m walking on broken glass and the last thing I can even think about doing is looking up to see if someone is looking at me for eye contact, though I feel like every eye in the place is watching me because I am sticking out like a sore thumb. Sigh . . .
I think of it as like being in a room full of people all yelling over each other to get your attention. The cacophony gets so loud that you can’t even hear yourself think.
I don’t even know where to begin. So much rage at the world.
Rage at the world is kind of the default state lately, isn’t it?
My older son has a learning disability (Dyslexia, we think. He will be assessed in Dec.) and I was recently told by the individual from special ed. whom we deal with through our distributed learning school as home schoolers, to *ignore* some of the goals in our IEP; that she had to put them there for the ministry.
Hooray for enlightened special ed professionals. This is a great example of what Notesoncrazy explained above.
wow…there just arent words for how I feel about this. These goal you listed, they are so wrong in so many ways. And its not just what they are suggesting about how people view autistic behavior, its also suggesting that the education system/society wants ALL kids to comply to what their told no matter what/not learn to be independant and think for themselves…and just put up with being anxious or uncomfortable rather then communicating to meet a middle ground. Why is there no goals here expressing a need to teach a kid to communicate? it just seems to highlight how much people dont want to cooperate, understand or meet in the middle with the minorities. Its this way of thinking that leads to problems like child abuse, it really is 😦
I didnt realize you have a tumblr! Can I have the address so that I can follow?
To be fair, I cherry picked bad goals. There were many that were good and useful and did work toward communication. What really got me angry was that in more than one of the communication series, eye contact was first or very early on and something to be mastered before other communication skills were introduced, which is ridiculous.
My Tumblr . . . I will email you since I don’t really want to make it a public thing tied with my blog. It’s more for my own enjoyment. If you follow me, well, I hope you like baby goats and abandoned places and Calvin and Hobbes with your disability activism. 😉
Calvin & Hobbes are so cool! I’m currently reading through all my C&H books (as part of my ‘read all my books’ goal) 🙂
I remember enrolling our daughter in kindergarten after a move cross country from the west coast to the midwest. This was about 16 years ago or so. I went in for a parent teacher conference and as we talked I explained that our daughter was a child who questioned things, did not sit still for the status quo and I wanted to honor that in her learning style. Way before me realizing that I’m Aspie tendenced (new word). The teachers reply to me was that the schools talked to corporations and or vice versa and they told them what they were looking for in graduates. The skills that would be needed when they were ready for the workforce. I remember saying and thinking, “What !!!” My child is not a robot. Follow the leader . . .
Yeah, schools don’t seem to like kids who are different or challenge the norms.
Hmm, my inner aspie-warrior-activist has been stirring for a while now…
That’s good to hear! It’s a rough road and always in need of more voices.
For once, I disagree. I imagine that the goal “packages” are to be perceived as templates to pick from, somewhere to start, and that each is supposed to be adapted to each individual child (hopefully) by picking all the unrealistic and irrelevant goals off, and customising the ones that are being kept.
I agree with you about goals like eye contact are unnecessary and intrusive (eye contact is a private matter, not something to force on people)… along with other sensory invasive goals, and that many of the goals are too compliance-focussed. However, I can see some good merit in the idea.
When I was a kid, I just didn’t know what to do socially in school – I had no idea. I was OK with structured socialising e.g. inside class where there was a clear order (even though I wasn’t a compliant kind of kid at all) but felt lost & stressed in the breaks where I couldn’t grasp the structure and didn’t know what to do, where to be et.c. Basically no teachers/adults noticed or worried about that, they just let me be, emphasised and encouraged my strengths, were tolerant to my quirks and deviations. That may sound ideal and in some ways it was good, but I didn’t learn the social skills I needed to handle adolescence and adulthood, and had no tools to help me figure out what to do in “freerange socialising”, and I was in no way able to work that out on my own.
To set up a “package” of social goals with specific metrics sounds helpful to me. For myself, if I imagine if I’d had something like that (even if I didn’t reach the goals and didn’t like them) would have given some structure, some specificity, a scientific approach to socialising. For me that would have helped “de-chaosing” the social sphere, even if I didn’t like the goals and thought the whole thing was ridiculous et.c. as I probably would, given that I wasn’t much compliant or attentive to what adults said to me.
“Assuming competence” in my case did not help me, because I didn’t have the social competencies I needed and wasn’t able to develop them (until much much later on through a combination of life experience, help and luck) because I didn’t have “a grip”… That’s what I see the IEP packages as, interpreted positively: some specific tools that can give a “grip”. A way to replace silly ineffective personal “desperate” communication habits that don’t work with specific tools that can perhaps enable some connections with others… then those connections enable some social learning… then that social learning can be used to improve the connections… which enable more social learning etc. Like a wheelchair to someone who can’t walk (yet).
I’m pretty sure this isn’t the first time you’ve disagreed with me. 😉
I know what you mean about difficulties with socializing as a kid. I had the same problem. And often the things I did manage to do and enjoy socially, I got either yelled at by adults or mocked by other kids for. So yes, I definitely see the merit in learning social skills and rules and having some sort of rule-based framework to fall back on. And there were goals like that in the databanks, though not a lot. They were often outnumbered by goals that seemed vague and unachievable to me.
I’ve seen a lot of social skills games (on Pinterest, which I’m trying to figure out) that would seem to give kids these tools, in a less high-pressure goal oriented way. For example, there’s a game where kids write what they’re thinking in a thought bubble and what it would be more polite to say in a dialogue bubble. That way if they open a gift and it’s disappointing, they can say something that won’t hurt the other person’s feelings but doesn’t feel like lying. The way it’s presented as a game or exercise seems to give the kid a lot more space to feel comfortable with taking these kinds of “foreign” skills on board rather than being told that they have to do X and will be rewarded each time they do, like a performing seal. (Sorry, I might not have fully worked through my anger on this one yet and it’s certainly not directed at you.)
I agree with you that specific tools are useful and needed and wish more kids were getting the kinds of tools that served a practical purpose rather than being overtly geared toward normalization.
Yes, I see what you mean. There are also more advanced social skills play-learning concepts, like the Secret Agent Society.
That’s a great link. Thank you for sharing it! I like how they’ve themed it as a sort of secret club that the kids get to belong to.
Ooo thank you for this link!!!
You are welcome:-) (both)
“Student will show desire to please teacher or supervisor” Wow. I’m always amazed that people don’t realize things like this are abusive. You can’t *force* a child (or anyone) to like and respect you. How do people not understand that this is fundamentally broken? It’s an abuser’s goal. It’s a manipulator’s goal. It doesn’t help the child, and it doesn’t even directly relate to practical things like following classroom rules. “When I tell you to do something, act like you enjoy it” has no purpose other than making the teacher/supervisor feel good about themselves. It’s disgusting.
‘ “When I tell you to do something, act like you enjoy it” has no purpose other than making the teacher/supervisor feel good about themselves.’
Yes, these types of goals just feel like they’re all about making the teacher’s life easier and completely neglect to acknowledge the students as autonomous human beings.
These goals are so gross. Student will tolerate tactile stimulation? Student will show desire to please teacher or supervisor? *shudder*
Agreed.
TW: Implied abuse or rape
I share your shudder. Every item, individually and together, sounds like that set was drafted by someone intent on harming children. (The trigger warning is as far as I’m willing to go to spell it out.)
I agree with the absurdity of 90% of the goals in IEP banks. It’s actually easier to get to know your student and then develop goals that actually *benefit* the child-not just make life easier in the teacher.
Personally, I ask parent feedback on what they think is realistic and meaningful prior to even starting to write social/adaptive IEP goals.
Thank you. It’s such a relief to see teachers, social workers and other professionals agreeing that there is a better way to go about this.
I love the visual that you used.
🙂
Thank you, thank you, thank you! I’m an Aspie now weil past 60, and my daughter is struggling with school systems and IEPs for her Aspie children. I forwarded the link to your article to her immediately!
You’re welcome! I hope she finds it helpful. There are also some great comments here from professionals with ideas on how to create IEP goals that work for kids.
Again, an excellent post of yours.
One follow-up thought: Just imagine enforcing such rules on children with other handicaps, such as blindness or deafness. Eye contact…if the child cannot see? Tone of voice…when someone has never been able to hear?
What about that bizarre 3-second rule applied indiscriminately? How are children with cerebral palsy or other muscular or neurological problems supposed to handle that? I think the chapter heading must have been: “The student will overcome all problems within 3 seconds. But it’s not really our place to tell ’em how.”
Talk about disconnected bureaucrats…
1. Should there be different goals for peoples varying levels of functioning? 2. How can these rules be changed/reworded? to ensure nurture vs control? 3. Must students be assisted to function better before the the freshman year of HS or can they keep putting kids into “mainstream” the last year to graduate them as successes who are likely to fail at college or jobs?
Great post!
I read this to my partner, without the intruduction, and at first he said that “yeh – this are the things that NT kids are expacted to be able to do.” Only after I read him the intrruduction, he was shocked, because it is just expacting autistic kids to be NTs.
About the eye contact: my partner grew in the US, and I was born in USSR (be both live in Israel) – and it is really unteresting to see how different eye contact in these countries. The eye contact that is useal in USA is considered wierd here. He feels totaly fine to stare in someones eyes for 10 seconds, somthing unheard of here (although, my autistic lack of eye contact is quite noticeble here). So yes, it is very cultural thing…
This is definitely a topic that needs discussion! I wanted to share a few things from my perspective as an SLP (speech therapist):
-therapists/teachers should NOT be copying and pasting from goal banks. We can use prewritten goals to help us word goals in a concise, parent-friendly manner if needed, but we should be the ones thinking of the content for the goal.
– Goal #1, IMO, seems to focus on initiating conversation. I interpret “appropriate/varied topics” to mean things that are relevant to the activity or discussion in the classroom, which is a reasonable expectation, and is a necessary skill for classroom participation.
– Goal #3– perhaps this student is consistently responding to greetings, but is not doing so until the other person has already walked past. Working on speeding up response time seems appropriate to me, and this is an important skill for developing peer relationships.
-Goal #4 is not specific to kids on the spectrum, and i work on this all the time with NT kiddos,too! This goal is used when kids have limited vocabulary or weak understanding of word meanings/relationships, and is used to teach the concepts of categories. this is a key foundational skill for higher level language tasks like defining and comparing/contrasting.
I just wanted to point out that not all of these were written with bad intentions! Some of these may have been poorly worded and unclear. Please remember that parents are IMPORTANT members of the IEP team– if you are ever confused or uncertain about something in your child’s IEP, please let the therapists know so we can make sure everyone is on the same page 😀
I hope you’ll read what Gareeth has written below because I think it is a reply to your comment. Also I wasn’t writing this from a parent perspective (if that’s what your last paragraph is implying – can’t tell if you are addressing me or general readers there.)
“perhaps this student is consistently responding to greetings, but is not doing so until the other person has already walked past. Working on speeding up response time seems appropriate to me, and this is an important skill for developing peer relationships.”
As an autistic adult (I’m in my early 30s) who still has a problem responding to greetings in a timely manner, I think I should add my thoughts to this: my problem has to do with information processing delays: I have delay in processing auditory information (so it may take me a while to realize someone is saying “hi”), a delay in realizing that the greeting is being directed at me, a delay in remembering the fact that I’m supposed to say “hi” back to the person (even as simple as this sounds, and even though I have this information *right now* that doesn’t mean I’m going to always remember it). I also have a delay in producing speech. Speech does not always come out of my mouth immediately after I will myself to speak. There might be a delay — in fact, there usually is. Now, what I say may or may not be audible, and I don’t always have control over this. It also may or may not be intelligible — and this also something I don’t always have control over. It may take me a few tries before I can produce audible/intelligible speech. So, by the time I’m actually able to say “hi”, the person who originally said “hi” to me may be long gone.
Speeding up responses to greetings might be an important skill for developing relationships, but it doesn’t mean everyone can do it, or that even if they can do it, that they can do it reliably. I mean, for me, this seems to be an issue of brain wiring, and I’m not really sure if there’s much I can do about it. This isn’t something that has improved with knowledge (I mean, I know what I’m supposed to do — but that doesn’t mean I can always do it), and it isn’t something that’s improved with practice (again, I’m in my early 30s, if all I had to do was practice doing this, I’d be a pro at it by now). I’m concerned that kids that have the same problem I do are going to be faced with a goal like that, a goal they may not be able to achieve, or which they can’t consistently achieve. They may end up feeling like failures. The people around them may not be aware that they have these processing delays. Of course, not all autistic people are like me. So it might not be unreasonable for some autistic people to learn how to speed up their responses to greetings. But it’s important to distinguish between those who can do so, and those who may not be able to do so, or those who may not always be able to do so. This really can be an unreasonable goal for some people. Even if it was written with the best of intentions.
Oh, and I hope I’m not sounding confrontational and negative, because that’s not my intention — I feel very emotional about this subject, so it may have come off that way without my intending it to, and furthermore, I’m not good at expressing myself with words. (Also, I have a feeling I may have misunderstood your comment — again, I’m not so great with words.)
Thank you for explaining this. I experience all of the same difficulties you describe here and share similar concerns but didn’t have the language spoons to explain in detail.
I so totally agree with paisley! There is a time delay, particularly when the contact isn’t totally expected (and planned). I go out with my dog and when we meet other dog walkers I can do the whole ‘hello’ thing without a problem because subconsciously I know that I’m going to say hello. I see them coming so I’m mentally prepared. I do a quick glancing eye contact, ‘morning’, and eyes straight back down. A small number of people I might stop and mention the weather to (my safe conversation) or a couple I won’t stop but they’ll make a comment as they go past (“very wet isn’t it” – that sort of thing) and I might or might not manage something more than a smile and a mumble (often while they’ve got several steps down the road). But I need to know it’s coming or at least be prepared for the possibility. Otherwise they speak and my brain goes “Oh ****! Need a word, any word, no not any word, must be relevant, quick, quick, ” the cogs spin at high speed and I’m frantically trying to come up with something that won’t leave me feeling like a prize turnip.
Last Christmas I went out for a meal with my ex-neighbours and their whole family. It’s one of those things that while I liked them, liked the meal and it went fine, I get more enjoyment afterwards from looking back. Anyway, we left the restaurant and were saying goodbye in the car park (me still winding down) and several of them wished me a ‘Merry Christmas’. Now you’d think that was a fairly standard comment at that time of year but I was in ‘bye’, ‘good to see you’ mode. I hadn’t considered including Christmas in it despite having discussed Christmas plans at the meal. It doesn’t flow like that. So my brain goes into meltdown and (after a delay) I come up with ‘see you again soon’ and escape into my car. No mention of Christmas! And telling them that I wanted to see them again in the near future was the last thing I wanted! (Christmas comes but once a year and so should social events!).
It’s not as simple as getting someone to reduce their processing time. I’m 42 and it’s not going to get better than this anymore than my eyuesight is going to improve without laser treatment or better glasses. What would be better is my accepting that I’ve got a delay there and saying ‘actually it’s fine, better to take my time and say something that actually represents what I think’. Yes, teach people what suitably appropriate responses are and by all means explain that ideally the pace of a conversation, however short, is x, but don’t impose society’s norms on everyone. We’re all different and we were designed that way. Far better to help people, especially kids, to appreciate themselves and their own attributes.
Without a doubt being able to be understood in spoken words improves a person’s life. It also complicates it.
What you have written is typical of how speech therapy is written about. What worries me is in it is everything that never gets acknowledged.
Processing speed will vary. Many autistics find it varies with stress but there can be other reasons but leaving that aside entirely you speak as if lower and higher order skills are real.
They are not. I have known too many children bored straight into seeming like they would never communicate because like myself when I was young I communicated when I had something to say. Which wasn’t often for a lot of years. The first sentence I said in English was “That mean man put mustard on your little sister’s hotdog” I had nothing more of great importance to say for a long time.
I have known so many kids who say quite complex things when they have them to say and don’t when they don’t. The people who drill them with vocabulary words have sometimes refused to believe what they could say when they had a reason to.
Then there are us pesky adults. Graduates of speech therapy our speech may or may not work. Because it is all written about in such nice linear ways it is hard for our existence to even be properly explained by our doctors. We are considered verbal and nothing that is charted about the impact on stress on that necessarily changes some people’s minds.
Why isn’t communication taught as more of a two way thing all along? Why isn’t acceptance of the variety of ways to communicate in there. Why the tie in of communication with peer relationships? Believe it or not they are possible without speech.
Speech and communication need to be written about with the full complexity taken into account or the goals will always seems unachievable and ridiculous even. No matter how much better the ability to say some things makes life.
Yes to all of this. Thank you.
An advantage of commenting later on such a post: outrage and disgust have been already appropriately addressed. 🙂
1 – Once again I am glad that an ASD diagnosis did not exist during my school years. Of course I was perceived as weird and had to struggle. So, life was tough but if my early years would have exposed me to those IEP rules ‘tough’ would have progressed to ‘entirely miserable’. Not being officially labeled for me was definitely better than any well-meaning accommodation that would have singled me out individually. The point “Student will show desire to please teacher or supervisor” made me giggle, nevertheless: Our entire class age 10-14 was so rebellious (despite good academic grades) that any teacher would have thought twice before enforcing anything like that.
2 – Is it only my impression that several of the goals (cf. the nice caption) as formulated come close to attempts of ‘curing’ us from some natural behavioral traits instead of assisting in the development of useful strategies?
3 – As mentioned in several of comments, IEP rules are most likely not formulated by professionals actually working with children. I can provide a corresponding example from another field where I am exposed to a similarly unrealistic goals: science. When applying for a research grant you are supposed to provide tasks and milestones to be reached over time, down to the last quarter of the fourth year. Stupid! If I know the outcome of basic research so long in ad-vance I don’t need to do experiments at all. Who invents such stuff? People who never did active research but were trained as administrators. In lab reality of course nobody cares for the prescribed ‘milestones’ anymore.
So, returning to the topic: How do administrators demonstrate productivity? By developing guidelines and forms and rules and … for people being ‘administrated’. They apply principles taught during MBA formation to unsuited areas. Same with IEP, I strongly suspect. Old but recommendable read on that principle: C.N. Parkinson’s first slim book ‘Parkinson’s Law’ (4.6/5 Amazon stars).
Oh no, much too long again. Pre-typed in Word it looked much shorter 😦
I know what you mean about the difference between tough and entirely miserable and have to agree. I also read many of the goals as an attempt at curing typical autistic traits and behaviors (the ones that I described as “normalizing” in particular).
The parallels to scientific research make a lot of sense. And it’s funny that you bring up MBA type administration. I spent a great deal of the time in my business school classes wondering if any of the people who came up with such elaborate theories and systems had ever actually done business themselves.
No worries about the long comment – they’re very much welcome here. 🙂
One of the things I keep reading is how we did not have the information then that we do now about Autism and Aspergers. People did not see it, missed it. The what if questions, what if it had been diagnosed then, how would it be different now. On the one hand I wished to god it had been diagnosed then, how much heartache would it have saved, but if it were diagnosed and treated, based on the ways my bothers were treated with their own issues (and they never got any kind of an ASD diagnosis in the 60’s or 70’s) and the knowledge they had then, I’m not so sure I would have wanted to have been diagnosed then. There were not services really. Medications like Ritalin were the way to go. Dilantin for seizures.
Even now you see the systems that they have in place, as noted by Cynthia and it makes me cringe. If the system thinks this is the way to treat kids to “make it better” they have a really long way to go. I keep thinking, how can they possibly know how to treat this, unless they have lived it themselves, from the inside out, or perhaps have a child who is. It’s not what they think it is, and they could be making it worse. I think of Bones in Star Trek when he talks about people being treated in the 20th century. I seem to recall that he called them barbarians on more than one occasion.
You can’t treat someone for an outcome you think is “normal” based on what it looks like in society. That’s like saying you don’t look like me, go use that bathroom, and that lunch room, and go stand in the back of the bus because you don’t fit in with what I’ve been told is right.
With a disability (my brothers were often called retarded and I hated that word), maybe I can teach you, like a monkey, to do what is right. Put the blocks in this way, push that electronic button, draw this picture the right way, and then you can pass for what is normal in society. As painful as not knowing has been all of my life, and as validated as I feel to seeing myself in so many areas of my life, now knowing what I know, I don’t know how I would feel growing up in this time in history where ASD is acknowledged, tested for, and yet we are expected to bend and conform to society’s norms. Is that any better than not knowing? If we bend and conform, are we any less better off than not knowing? Bending and conforming is denial of self too, adapting to fit in, just as we did to fit in without knowing what was going on with us. Which one is better. Being passively told through family, media, education, work, relationships (such that there were) that we were “different” – nerdy, outcasts, (at least we could be us a little more), or being diagnosed by the system and then having a plan created for us into which we were given goals to achieve like a trained chimp. Make eye contact, respond appropriately, ring the bell and then get a treat.
All the while also trying to manage a sensory barrage, a din of sensory stimuli via sounds, smells, touch, vibration and the list goes on.
It seems that those of us that are older and now being diagnosed might have something to contribute to the expanding awareness of ASD. We may need to be part of the groundswell, the watershed of change that will help those who come after us.
I only realized last night when I was finishing Jeannie’s book “Twirling Naked In The Streets” that I have always had special interests and never recognized them or called them that. I never realized that full out going 60 miles an hour on a project was not normal. That’s how I did and do anything I have a passion for. Then I drop it like a hot potato because it no longer interests me. It does not seem like we have come that far since I was growing up in the 60’s.
I’ve now read The Complete Guide To Aspergers Syndrome, Twirling Naked In The Streets, Been There – Done That – Try This, Developing Talents, The Autistic Brain, Aspergers On The Job, 22 Things a Man Must Know (before I gave it to my husband to read), Aspergirl, Very Late Diagnosis of Asperger, and a good part of The Way I See It, and I just bought the Kindle version of Nerdy, Shy and Socially Inappropriate and I’m reading that now.
I’m reading Musings of an Aspie, Autisticook, and aspiewriter (thank you all) and all of the wonderful comments made when comments are an option.
I feel comforted in these stories, the courage and wisdom is a balm to me.
I realize in rereading the above that anger is creeping out, and sadness as I walk this journey of discovery, wishing that indeed, there had been better tools and a better understanding of this all those years ago. That the doctors who looked at me and did not see it, or as an adult that said it’s nerves, or all in your head- take some vitamin b. The teachers who grabbed my cheek and squeezed to the point of pain as they scolded me for not being able to cursive write, or the teacher who spanked me in front of the class because she was told I swore by the other students. All of that and more, I want to be different for others.
I am also grateful that I am putting the pieces together, understanding that I did do the best I knew how in friendships, that my struggles in school were not because I was stupid, or bad. I am gaining more peace in my heart with every story that I read that I see me in, and as Jeannie said in her book, at last see myself, and know that I am not alone.
I’m grateful to be a part of the groundswell that is taking place, a little at a time through blogs like this one and others. Here’s to the inherent strength that is in each of us, to not giving up.
What a post you wrote!!!!!!!!!!!!
I can’t remember how many times I started to read… and left it… and started again… and left it again.
This has never happened before, I was always able to read. This time it took me days and so many attempts.
But now, like Ernest says, most comments have been made, Nelliepmore confirms, and I am grateful to you, Cynthia, to have caused all this upheaval in my mind (thank you so much for overcoming your own before posting!), and to Ernest and Nelliepmore for having worded at least part of my difficulties in reading through all of this.
Seems that you have touched, Cynthia, a nerve in a 50plus woman diagnosed recently. Made me think about my own life, my children, their father and all of the extended family… and with the knowledge of now, I can’t find a member of that family that wouldn’t qualify for a diagnosis. Family members acquired through marriage included. Certainly, there is damage through non-diagnosis, in me like in all the others. But if I think of the damage that might have occurred to all those people that I have highly estimated in my life, that I have come to estimate for their gifts that are uncommon had they been treated in the way your examples explain… No, like Ernest, I tend to think that I have been lucky to escape such treatment as you mention in your post even taking into account the damage due to non-diagnosis, non-awareness.
And yes, Ernest, one of my children is currently considering not to engage in an academic career due to the difficulties you have been pointing out. It is a shame because the child did want nothing else than a career in academic research since s/he was fifteen. Now, at the end of his/her PhD, s/he looks into other job opportunities.
In structured Aspieness, may I do 1, 2, 3 again?
1 – I feel encouraged by your comment and that of nelliepmoore. Apparently we agree that, overall, our lifes were easier – relatively speaking – without an early diagnosis. As an avid reader of Cynthia’s blog (ahem, for adults with late diagnosis 🙂 ) I estimate we are the majority. Even with 50:50 or less: should health care specialists not ask themselves why that is the case? Even if many of us are parents of children on the spectrum? Does this not cast some doubt on the current principles of educating children with ASD? In current discussions on general pedagogy for NT children you hear that a shift from concentrating on weaknesses towards fostering talents and strengths might be beneficial. So, maybe in comparison like finding common ground with Aspies (as a minority) for mutual benefit instead of trying to assimilate this minority out of good intentions?
2- I was deeply moved by your last paragraph on your child with their deep love of science. Was the same for me, always, could life it, partly due to good luck. Believe it or not, at present I have a brilliant undergraduate student in the lab who is an Aspie. Her analytical mind is sharp as a razor, far beyond her age. Plus she is a really gifted experimenter. And then there are the quirks, the shyness, the occasional meltdowns, the… In a group of peers with elbows, she would be highly vulnerable without assistance. She is my latest / last major project. I want to create a ‘safe’ and lasting environment where she may thrive. Maybe your kid can search a little longer? In spots out of the mainstream, ears and eyes wide open? There *are* quiet places of science, with less competition, just rare.
3 – This exchange – again – is a reason for me to thank Cynthia for her blog. It is a place that feels like home: welcoming, warm, safe, where you can talk to like-minded friendly people – but our common table stays virtual. How wonderful. All of it.
Great post Ernest. Thank you. I agree about focusing on what works. I’ve been reading so many books over this past month since recognizing myself on the spectrum, as well as reading great blogs like this one. So much of what I have read has been helpful, some of it has been discouraging, and I found myself listening to the words of people who were focusing on what did not work in their lives.
I have that too, but what I also now, is how much I have accomplished as someone living with these challenges, and not knowing the why of it all. Knowing is bringing me so much relief, and so many aha moments, both about myself, and my parents and I’m sure my mother is on the spectrum now.
As I grieve and let go of what I judged as bad or wrong about me, I now also celebrate that those same things were and are who I am. I have more gifts with this diagnosis, then challenges. I just need to be aware of where I place my attention. The young women in your class is blessed to have your wisdom and guidance. That is another one of the gifts that we give, being in this world. I agree, foster the talents, for all. Focus on what works in the world. Honor it, celebrate it, foster it, help it to grow. Seek solution’s from that same place. We would be in such a better state were we to do that. I too love this wonderful blog and though I am new to it, it certainly feels like a warm and welcoming place to be.
I can see how this post would be difficult to read and actually considered putting a trigger warning on it because of the upsetting content. It’s good that you are able to finally get through it and that it’s given you food for thought, even if some of those thoughts might be difficult. But a great deal about how I might be different if I’d had a diagnosis growing up and it’s really hard to say. I do know that I was lucky to of been allowed to be myself and that’s had a huge impact on how I “turned out” as an adult.
Wicked Which that was a great post. Thank you for sharing and I wish your child the very best as they choose what is next for themselves. I know that for me as I go through this diagnostic process waiting for the “official” verification, I think about our children and what they will say about this when I tell them. They are all adults, out and about in the world, contemplating having children, getting married, married, single and I wonder what they will say or think, how they will feel. I hope that they feel as I have, some sense of relief that they understand themselves better, and me better in light of knowing the bigger picture. Last year when I was diagnosed with epilepsy, and a brain tumor (meningioma) our youngest daughter said oh, that’s what it is, with love, but also with dry humor. My kids see my quirks so I hope that they can see this diagnosis as a good thing, a “so that’s it what it is” mindset, and see the good, and apply that to themselves too, in any way that it fits and is helpful. For your child it might be that knowing what they are dealing with, living on the spectrum in some way, they can take that knowledge in hand, when they do decide what they would like to do in the world. Had I know this about myself on a conscious level when I was younger, I would have used the knowledge to explore a career that honored my natural talents and gifts, instead of trying to make myself fit into a square shape. It would have saved me so much self judgement and repeated attempts to “make it work” when in fact I was not meant to do that kind of work. What I was good at, what spoke to my heart, were those things that I enjoyed and took pleasure in as a child. Nature, beauty, art, drawing, decorating, arranging. These are quiet, peaceful, contemplative things that fill my heart with peace, and, they can be of benefit to others. They can be paying positions. Working from home can be a good thing, is a good thing for me, rather then me judging that I was being lazy or irresponsible when I was not comfortable working in a corporate setting and found it exhausting. Knowing what I know now, I can choosing a new path, art and beauty are my new path, the path has come back round for me and I am so grateful and happy. May your child find the same peace and happiness in their chosen path.
Cynthia I just bought your book and downloaded it to my kindle and know I will treasure it. The parts that I read on the blog have been so helpful, I know it will only be better to read the whole book.
Thanks for your replies! I have – children are officially diagnosed dyslectic – informed both of them of your advice, reducing the text to the essential, giving the source so that, if ever they can spare the time and the effort, they will be able to read the full text.
By the way, that was/is one of the things that I have always been able to do for them – scan considerable amounts of text rapidly, make them read only the essence and discard the rest. Individual talents used for helping the group/family/etc, that’s the concept I love. Cynthia has explained many a time how she and the scientist and their daughter are doing it.
I hope that your children take it well. As adults it will hopefully help them understand you better and make sense of anything that they might have found confusing either as children or in retrospect. I think that’s been the case for my daughter and I. For the most part it’s been a very positive experience.
I hope you enjoy the book and that your journey toward diagnosis continues to be a fruitful one.
Thank you Cynthia. I think they will. It’s likely they already suspect something ; ) I posted a question on the goals page. As I was reading your book last night I came across one of this items related to Aspie’s. How we don’t call people by their names. Is that really an Aspie thing and why? I’ve had trouble with it for as long as I can remember and was stunned to see you mention it in your book.
Oh yes, I saw that question and meant to answer but then lost track of it. I don’t really know what the reason is for having difficulties with names but I’ve heard many other people on the spectrum say the same thing. In fact, there’s a post around here somewhere with a detailed discussion in the comments about this. It may be one of the survey posts. Perhaps you could turn it up by using the search function and searching on something like “first names”? That might be like searching for a needle in a haystack though. 🙂
Maybe it’s just that we don’t believe in wasting our energy of words that don’t add anything 🙂 After all, unless you’re using someone’s name to get their attention it’s unnecessary. And I tend to go overboard with the number of words I do use sometimes so I’m keeping my word count down!
Me too 😀 Was really amazed when encountering it and initially thought: ‘Do NTs really use first names in conversation?’ Some observation: they do, indeed!
The funny thing about it, for me: For more than fifty years before diagnosis it also never occurred to me that NTs look each other in the eyes when talking. The really do that? How strange! 😀 I had passed all these years by looking at people’s mouth and considered that entirely ‘normal’.
Thanks Cynthia for answering my question. I was just so surprised to see names, another one of my quirks, as an actual Aspie quality. I was alone in our bedroom reading your book before bed and I about yelled out loud when I read that particular quality on the checklist because it has been an issue for me. Is that on the official checklist of diagnosis? It’s just another thing that confirms my self diagnosis and that I will mention to the doctor that is doing my testing. I’ll try searching for the post. Perhaps it will turn up. Thank you for all that you do and I hope you are having a better day today. ❤
Liz and Ernest, Yes, people – NT’s anyway, do use first names all the time in conversation, they use it to say hello, to say goodbye, and lots in-between. I don’t know why it’s a challenge for me, but before reading it on the list in Cynthia’s book, I thought it was my own special brand of odd and it has bothered me for as long as I can remember. I can’t say that it feels like it is a waste of words or energy or time, I don’t think that’s it. At least not for me anyway, and goodness knows that I can use my share of words in a favorite subject, and especially when writing – an area of gift for me. It’s something else, this discomfort. As I shared in my original post on this, it feels the same kind of uncomfortable that it does to look someone in the eyes. Perhaps I see it (using someones name) as very personal, or intimate. A place of belonging to someone. If I am talking to someone, or writing them a note, I am directing myself to them, I am attentive to them. Why do I need to add their name to deepen that connection. I feel like I am already fully present with them.
This topic is one I’ll be mulling over for sure and I’ll do some haystack searching here on the boards as well to see if I find that old post. I’ll be mentioning it to my doctor as part of the diagnostic process too. I am so grateful for this community and the people here. Of all of the communities that I have visited in this past month as I find myself, this is the one that I have learned the most and “met” great people. Thanks! 🙂
You’re right, it does feel personal. And so awkward for me.
I’ve found one reference in my haystack search so far . . . you’ll have to scroll down a bit in this post but it’s in there.
Yes! That was the post I was thinking of. Thank you for hunting it down.
Your welcome! It took me a bit and I found other great stuff to read on the way, like that fact that I am not alone in having difficulty with my times tables, or getting my left and right wonky and instead of trying to say left or right I’d laugh (with people like my husband that know me) and say go that way and point with my hand – which is not helpful if he is driving and asking for directions and I am pointing while his eyes are on the road. Sometimes I’ll answer right, I mean left, and he’ll just laugh.
It’s reassuring to let those two go as well. I used to beat myself up so much for not being able to get the times tables down. I’d resort to counting on my fingers and lose count, and try to hide my fingers under the desk because the teacher would make a comment about being to old for that or a fellow student would laugh and I’d think oh god, what an idiot I am. It’s funny because I was fascinated with the number five as a kid and how easy five could be added and be ten and then 15 and then 25 and so on. That one was easy. Eight times Eight (64) always stuck in my head too, as did seven’s being 14, 21, 28 and so on. Who knows why.
I’m glad to have found all of the references to not using peoples names. I don’t understand any better why we do it, though the personal nature of it most fits for me. One more thing to tick off on the growing list of, Yes, that’s me for the testing.
I am glad you took the time to track the post. Because: stuff for more thought. I realized that I feel really uncomfortable when somebody addresses me by first name. Someone crossed the perimeter of the space that is ‘me’! Potential danger of somebody getting too close. Alarm bells! So, at least in my case, not using names may have a reason in politeness, Aspie style: not to transgress into the private zone of a conversation partner.
Sorry. Was meant as a reply to nelliepmoore a few comments above for finding https://musingsofanaspie.com/2014/03/14/pronoun-reversal-and-confusion/
I’m glad I found it too. It’s one more thing I can bring with me to the diagnostic appointment. For me it’s important to have that diagnosis. After reading all of the comments in that post that shared their degree of discomfort with it, for all of the reasons mentioned, I know that is me too.
My name is a personal thing, a private thing. Though I know it is something given to us by our parents at birth, and is used in our society as a form of identification, for me it is much more than a name. It’s a part of my inner sanctum, more personal than I give anyone permission to use, especially on a casual basis.
” ‘Always comply with adults’ teaches unquestioning compliance, even with potentially harmful-to-the-child demands.”
My personal experience shows just how harmful, especially for an autistic person, such rules can be.
My parents, particularly my mother (herself the victim of severe child abuse), taught me that I owed my parents lifelong unquestioning obedience. She made me believe that I was much too incompetent to ever manage my personal affairs, and that I needed my parents’ absolute control of every detail of my life to protect me from myself. In return for my parents’ ‘loving’ efforts in my behalf, I was to show my eternal gratitude by literally serving as their domestic slave for life.
And so, likely being on the spectrum, I believed everything my parents told me. I obediently slaved for them for decades, never moving out, or getting married, or giving any thought to living my own life. Others thought our family was weird, but nobody ever said or did anything to intervene. After I began to grow suspicious and I asked others for their honest opinion, they simply became nervous and kept silent. I naively took their silence to mean that they agreed with my slaving for my parents.
Finally, at the age of 43, I came to recognize the true state of affairs and fled from my parents on foot with little more than the clothes on my back. Hardly anyone helped me, and many even pressured me to return! When I tried to explain matters, almost nobody believed me, and some openly scoffed at me.
I am now 56 years old, and still struggling to pick up the pieces of my life. I have only quite recently recognized that I am very likely on the spectrum, and I am so glad that I have come across your website!
Thank you for sharing your experience. It’s so important for people to realize how monumental and lifelong the effects of this kind of compliance training can be. I hope you’re able to make it to a good place in your life at some point. It sounds like you have a lot to recover from and I imagine it will take a lot of time and effort. Hopefully learning more about the autism spectrum and how it fits into your identity/life/coping mechanisms will help in that process.
Especially when it’s combined with messages like “you aren’t entitled to have bodily autonomy (#6) or to express negative emotions (#3)”.
#3 is wrong for another reason as well. I clearly remember attending appointments with a child psychiatrist on several occasions before she realised that the reason I denied grimacing wasn’t because I was mentally ill, it was simply because I thought I was smiling at people and naturally denied it when accused of ‘pulling faces’ at them. Nobody had thought to ask me what I wanted my face to do before flinging accusations at me.
Yes! I tend to look like I’m in pain when I smile “on demand”. Or at the very least like I’m completely faking it or grimacing.
Interesting. I may have seen some of these during my years in the classroom, but you would have never known I signed off on them. My classroom was the one where the kids went to the bathroom when they wanted, did their work at their desk or on the floor, and went to Utopia (quiet place in the room to be alone as long as they liked, voluntarily). I never knew I was AS, but somehow I knew that goals like this were unreasonable. The kids never bothered me. How many adults would like to have that set of goals for them every day? Nuts.
Good luck telling a percussionist to play a concert Bb scale on a snare drum.
I’m sorry but I think I cringed at every single one of these. I’m 30 and couldn’t comply with 99% of this crap. Tolerate tactile stimulation almost made me cry just reading it!!! The thought of being subjected to undesired stimulation that my brain doesn’t just perceive as uncomfortable but sometimes outright agonizing …nah I can’t even think about it without feeling miserable. Maintain eye contact??? I totally get what they’re getting at with it but even now I can’t do it…it’s like queuing me up for a full blown panic attack. And I can’t recall a time I’ve EVER ‘initiated appropriate…’ any form of conversation with anyone my age. I don’t care about the social niceties that I find exhausting and a waste of time to meander. I don’t want to try to unravel people’s cryptic answers to questions. I don’t want to play 20 questions with people…however if they want to play 1 million random medical facts you probably don’t actually want to know…I’m always up for that one and I won’t sugar over the gross stuff. Ah there I go again being too autistic for them.
I’d hope that plans like this could learn to improve skills without trying to undo autism. One day the neurotypical world will understand its a life long thing. It doesn’t go away. We can’t will it away. Some of us adapt better than others…and good for them…I wish I could stop clawing at my skin when I feel wool or something near my neck. I wish I could stop rambling endlessly about my interests till I totally shut others out. I wish I could read social cues. I wish I could make eye contact and be totally confident in myself. I wish I could go through 1 decade of my life without being abused or harassed because of the little things I still struggle with.
If adults struggle to meet most of these goals, cringe at the thought of them, or can imagine themselves falling to pieces trying…what does that say about what we do to children who have enough on their plates because their mind is just different? Somehow I guess I’m not surprised at the ‘stomp out the autism’ mentality. I see it in my adult life all the time…and yet it still makes me sick when I see it.
Thankyou for our blog! Recently I’ve been reading others since discovering hat I am an Aspie. My life’s experiences now make sense to me but as is said, the inhernet things can’t be “cured” and I am no further ahead in understanding body language. A couple of things I did not mention in another blog was the lack of eye contact which is second nature to me. I occasionally wondered about that but now understand why I was unable to do it. Also I never knew where to begin when asked to write some fictional essay in primary school. Although I could spell well, English classes were a nightmare. I hated having to read the “great” literary tomes I was asked to and could never understand the nuanmces in them. Still don’t. And I learnt to copy what thers were doing just to try and get somewhere. My personal passions were generally not part of my school life at all. I’m now 68 and consider my life to have been a waste to a large extent. I suppose this comment is out of place in this particular blog section but felt moved to say something after reading your thoughtful words and comments by others. To identify what one’s life has been is a gift. Finally I’ve found others like me, after all these years in the wilderness.