A therapist asks: I’m a family therapist offering in-home sessions. I have a client with a three year old boy with autism. Each time he sees me, he throws a screaming autistic tantrum, hitting his head with his fist and raking his fingers across his face until red. There’s no outward reason for the tantrums. They aren’t typical toddler tantrums, such as when a child wants another cookie and mom says no. The self-injury aspect alarms and baffles me, and unlike most toddler tantrums that last a few minutes then fade away, this boy continues for the entire time I’m in the house. He won’t speak to me. Developmental charts for children his age state that he should be using words to express his needs and wants, and that he should be speaking in full sentences. At this age, he should have a vocabulary of 1000 words. I’ve heard him speak no more than a dozen words.
Your book says that when a child is overstimulated, we should remove the child from the situation or the situation from the child. I’d like to overcome this problem and be able to work with the family. What is it about my entering this child’s home that sends him into such distress?
Ellen answers: My heart goes out to your young client, as I certainly lived this with my own son. It’s difficult for me to make suggestions or judgments about a child with whom I’ve never spent time, but I can offer you some food for thought.
First, I ask you to reframe some of the language with which you interpret the situation. I don’t believe there is such thing as an “autistic tantrum.” This child is giving you very clear communication in the only way he is able. An urgent need is not being met, urgent enough that he must resort to hurting himself in hopes of being acknowledged and getting relief. Unless you’re willing to dig until you find the source of the behavior and do whatever is necessary to alleviate the need, the behavior will continue.
Although you see “no outward reason for the tantrums,” there’s always a reason. It’s our job as adults to identify the reason. It’s often difficult, but always doable. You’ve identified the situation as something more complex than an ordinary child-wants-a-cookie tantrum, so it’s not a tantrum, is it? It’s some kind of sensory or emotional overload.
You describe how merely walking into this child’s home triggers his screaming and scratching. Since I haven’t observed this firsthand, I can only try to picture the situation. That’s what I suggest you do, but from the child’s standpoint rather than your own. Step outside yourself and take a very, very dispassionate look at how you present to this child. Take into account his sensory issues and emotional issues based on his past experiences. The face scratching suggests it might be something sensory. What are some possible sensory triggers?
- Many children with autism can’t tolerate even the slightest odors or fragrances without feeling physically ill. Hand lotions, body washes, laundry detergents, fabric softeners, breath fresheners (or natural breath or body odors) can cause genuine nausea or dizziness. Anything with a scent may be the culprit.
- Something in your manner of dress may disturb his senses. Most children with autism have highly developed a visual sense. Some teens and adults with autism have reported not being able to look the clothing of people who dress brightly (“it’s like pins in my eyes”). Some have trouble looking at clothing with images or patterns, which appear to them to be constantly moving.
- It may be something in the tone, pitch or level of your voice, or the speed at which you speak.
- It may something be your body language that intimidates him. Perhaps he feels that you tower over him, encroach on his personal space, or make sudden or abrupt movements that frighten him.
Or it may be an emotional response. Have there been other practitioners in the home, with whom he’s perhaps had unhappy experiences? Have you (or previous practitioners) asked him to do things he dislikes or at which consistently fails? Do you resemble someone with whom he’s had a bad experience? Perhaps you’re coming at a time of day when he’s tired, hungry, or being asked to miss an activity that’s meaningful to him?
And children with autism can often sense more than they can express. Might he be picking up a vibe of disapproval or frustration? Alas, many such children live with a constant diet of this kind of feedback, and we can only imagine how it can kill any desire they might have to try doing the things we want them to do but are so very difficult for them.
Finding the source of your client’s the behavior is essential. You don’t say how far you’ve read into Ten Things Every Child with Autism Wishes You Knew, but Chapter 9 is all about identifying behavior triggers. I think you’ll find some answers there.
You also describe a child who appears to have no functional means of communication. There’s no value whatsoever in quoting data that suggests how many words he “should” have and how he “should” be using them. He doesn’t have those expressive language skills yet, so the onus is on the adults in his life to provide him with an alternate means to communicate. Again, step outside yourself and your certainty that your chosen form of communication is the only or best way. Imagine yourself as a toddler who cannot express his needs and wants. Imagine the frustration. When I speak at conferences, I put my audience through an exercise simulating what it might be like to lose their functional means of communication. Envision having to navigate your day with your mouth taped shut and your fingers taped together. No phone, no email, no texting, no Facebook or Twitter. No functional communication as you know it. Imagine trying to do your job, fulfill your responsibilities, meet the expectations of family, coworkers and community. How effective would you be? How would those who expect things of your react? How long before your inability to communicate in the manner everyone else expects cause you to boil over in frustration, anxiety, anger, fear? What if it wasn’t just for one day, but every day?
If you can imagine all this, I hope you can begin to feel the great urgency and great poignancy in your wee client’s challenge: language is only one vital area of his life in which he struggles. He cannot communicate in the manner you deem functional. So it becomes incumbent upon you to learn to communicate with him in his way. If he doesn’t have a picture system, I recommend the work of Linda Hodgson, a real guru in this area. You can find her on the web.
Something about your presence in the child’s home is overwhelming to him. But there is an answer. You just have to find it. Are you familiar with behavior logs? That might provide you with a lot of information rather quickly. I hope I’ve given you some ideas for where to start to address the situation. Remember that the situation may not change overnight. It may be weeks of small incremental improvements. Thank you for wanting to stick it out with this little guy. He’s worth it.
© 2015 Ellen Notbohm
Ellen, I agree entirely with your response. The nature of the query from the family therapist worries me that she has so little knowledge of the child’s needs and his inability to communicate, yet she is there to act as a therapist. I always tell all my families “All behaviour is communication” but it is our responsibility to work out what the child is trying to communicate to us and to respond accordingly before we even try to teach them more appropriate ways of communicating.
My response was certainly the same as yours about the child’s visceral reaction to the arrival of the therapist and agree it could be something as simple as her perfume or clothing.
If I was experiencing such a reaction I would know it was me causing it. I would first try to discover the child’s favourite foods, toys iPad games and walk up the path to the house, but when the door was opened I would not go inside but sit down quietly outside and present myself in an unthreatening way without interacting at all with the child. I would show him that his favourite toys and foods were available for free without any demands being placed on him. I would do this quietly, calmly and patiently for as long as it took for him to have the confidence to approach me. Over time, hours or days if necessary, I would move to just inside the door and over further sessions gradually move further into the house, still offering favourite things to pair myself with those pleasurable things, but only allowing the child to access those special things through me. As the child’s anxiety dropped and confidence increased I would then and only then start to place the lowest level of demand to start to make the favourite things contingent on something.
Reading the child and how they are trying to communicate as well as being patient will pay off in time and really are the best tools we can offer anyone.
Yep. Yep. Yep. We’ve got lively discussion about this going on my Facebook page. As I pointed out over there, the person in the post was a family therapist, not an autism consultant. She was confronting this behavior for the first time, and reached out for more information. The child’s autism was probably but one aspect of a family dynamic she was trying to evaluate and address. I worked with a family therapist some years ago; she was excellent but had no knowledge of autism–but willingly jumped into learning about it. I share letters like this because they are indicative how we can help our kids, one person, one mind, one perspective at a time.
I agree with everything you mentioned, but I’d also like to bring up the importance of routine and difficulty making transitions for many autistic people. If the child follows a set routine and has a schedule, how is this therapist coming into the home being communicated to him? Is it put on the schedule? Is he being asked to stop a preferred activity to interact with the therapist? Will he be rewarded after the therapist leaves, and how is that being communicated?
I would recommend visual supports such as a visual schedule, social narrative, token board, and/or visual timer so that the child understands who this is coming into his home, what is expected of him, and how long it will last.
I worry about how little training therapists receive about autistic disorders. I got mine 15 years ago, and there was almost none – and I went to one of the top 5 ranked schools for counseling in the U.S. Even if the training is there now, many therapists are still in practice that never received it. As a parent of a child with Asperger’s, and a trained therapist, I have provided continuing ed workshops to mental health professionals in the hopes of helping as much as I can, and I’m planning to create some online courses soon, as well. Those of us who understand ASD need to keep working hard at helping therapists learn how to understand and treat ASD. I’ve also given your book to many teachers as Abby as gone through school. Thank you for your work, Ellen!
How about he is upset because she is placing demands on him (as she should) and he simply is telling her he does not like it.
I would also recommend she do some training with ASDs if she truly wishes to help this family. She has taken the first step in seeking out literature and advice on the topic, but for a family therapist working with an Autistic family that is not enough. You cannot help this boy if you do not understand him for who he is and his braintype instead of where you think his physical age says he should be. She could start with the Autism Society website, they have a free online seminar thing that gives a very basic overview of Autism Spectrum Disorders. It’s a good start for learning the terminology. Then look into workshops or training opportunities in the area. A focus on meltdowns and nonverbal communication would be very beneficial at this stage. The picture system is a good one, also many autistic children take to sign language (modified or standard) quite well so the therapist and family could look into that. They can start small, there is even a sesame street alphabet sign language book which might be a good starting tool for a young child. And, like you’ve said she really needs to check her language. It is hard for me as an autistic adult not to take offense to the presumptuous and patronizing tone; I’m trying not to read it that way because she clearly doesn’t know, but it is hard. For a child, screening this out would be much more difficult.