Today's quote is from...me! From a recent podcast interview with Dr. Mary Barbera:

"Good ABA start with parents. So, for any parent or caregiver, if you are trying to determine a quality place for your child to receive ABA services, you really have to start by looking at what's the goal of intervention. I really feel like that's like the foundational first step, because if you are speaking with a company or a provider and they're talking about: 'We're going to fix this, we're going to correct blank, we're going to make your child more.../ We're going to remove stigma',  and other words like that, all of those words are getting at normalization. Which should not be the goal. The goal should not be to magically make it as if your child were born differently. The goal should be to give the client as many supports as needed to contact the things they to need to contact in life. For example, letting people know when you want food, using the bathroom,  attending school, etc., because in certain parts of the world children with disabilities don't attend school. So, we really have to look at what this means for the client and removing barriers to being able to do different things in their life. And then we address each barrier one by one. That should be the goal of ABA. 'We're going to help your child do _____/We're going to make it easier for your child to do ____". That should be the kind of language that is being said by a provider, or by a company.  It should be very, very concerning when you are contacting an ABA provider saying you need help and that provider is instead telling you, 'Here's what we're going to do', and they're not listening to you and they're not taking your input and they're just saying, 'Oh, yeah, yeah, we know what to do. We know autistic kids. Here's the standard protocol. Here's the strategy'. No, that is not how that should work. Absolutely not."

Good ABA services are a must for some people. Yes, people. Not just small children.

It can be a must for disabilities beyond Autism.

It can be a must inside of the classroom.

It can be a must in adult day programs and residential settings.

It can be a must when harmful, destructive, violent problem behaviors are serving as a barrier to least restrictive settings and placements.

ABA intervention at its core, is about teaching new skills and removing barriers that get in the way of learning and being successful in life. NOT a push for normalization.

Quality intervention that is generalized across caregivers and settings, can bring about amazing long-term success and developmental gains.

Take a listen HERE for more tips on distinguishing between good & bad ABA providers.

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Tameika Meadows, BCBA, Blog Author

 

"This is hard" is a statement I often hear from families both in the midst of intervention, and pre-intervention during the assessment phase.

Families without support and services find it hard helping their Autistic child navigate the world, and families in the midst of therapies and interventions find generalizing them to be hard.

It's hard to consistently generalize an intervention plan outside in the home, on the weekends, on Sunday at the grocery store, on vacation at Grandma's house, or at 6am on a Saturday when your child only slept 2 hours.

But its also hard to supervise/monitor your child 24-7, to break up sibling fights all day long because your child can't share, to find quality childcare options when your child is highly aggressive, or to figure out if your child is ill or sick when they can't tell you.

Both are hard.

It is rarely a discussion of hard vs easy, and much more common is a decision regarding which "hard" is acceptable. Yes, toilet training is hard work. On the flip side, changing an 8 year-olds diaper isn't exactly easy. Nor is it easy to afford to buy diapers for that many years.

Yes, teaching your child to use utensils instead of eating with their hands is hard. On the flip side, restricted diet and issues around mealtimes can be made worse if the child will only eat finger foods (typically, starches and carbs). That is also hard.

Yes, it is hard to consistently follow a Behavior Plan when in public with your child. On the flip side, being asked to leave locations, having friends ask that you not visit, or being scared someone will call the police on your child during a public outburst, is a hard reality to live out.

You have to decide which "hard" to accept.

I intentionally use the phrase "intervention plan" and not "ABA therapy", because maybe your child isn't receiving ABA services. Maybe you don't want that, or can't access it.

But are they receiving Speech services? OT? PT? In special education at school? Attending an Autism preschool program?

If so, these are all interventions designed to minimize developmental delays and target current deficits.

Whatever kind of intervention your child participates in, there are a few components that tend to be the same across different therapies:

1. Consistency. In order to be effective, the intervention must be applied consistently. Frequent staff turnover, frequently canceling appointments, or other issues like this can negatively impact results.

2. Training must carry over to the home setting/caregivers. There is no way to generalize the intervention if you have no idea what it is.

3. Caregiver Participation. In order for #2 to happen, the caregivers must be willing and available to participate in the intervention/treatment plan.

4. Focus on progress vs miracles. Progress can be slow, it can be up and down, and at times it can mean treading water. Sometimes an absence of regression IS progress. If you have sky high expectations of the intervention process, this can cause "provider hopping" where families move from one agency, provider, or intervention to the next looking for magic. That just is not how quality, ethical treatment works.

5. Individualized Intervention. It doesn't matter if your child receives 30 minutes of Speech each week, or 15 hours of ABA. Are the treatment goals and the teaching methodology suitable and appropriate for your child? "Cookie-cutter" intervention is when treatment is applied in a lazy, vague, and generic way across multiple clients. In order for intervention to be effective, it must meet your child where they are and incorporate their unique interests and motivation(s).

*More resources below:

Happy or Therapy?

The Easy Way vs The Hard Way

Evidence Based ASD Interventions 

Effective ASD Interventions 

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Tameika Meadows, BCBA, Blog Author

 

"If you want to see competence, it helps if you look for it"

Douglas Biklen

To presume competence is very important considering the work that many ABA professionals do with highly vulnerable populations who may be unable to reliably communicate/self-advocate and could also have high support needs on a daily basis.

It is important to always place a high value on dignity and self-determination, to whatever degree is possible for the individual (your child, student, client, etc.). What do YOU want to eat (and absolutely NOT want to eat)? Where do YOU want to sit? Is that shirt comfortable? Do you like this school? Are you feeling okay? Are you hungry...tired....ill...bored....sad?  

It may not be possible for the individual to answer questions like this, but to presume competence is to assume that the individual absolutely has an opinion on these matters, even if they are currently unable to communicate that opinion to anyone. Make sense?

Here are more tips on how professionals/teachers/caregivers can work toward intentionally presuming competence:

- Always ask before giving assistance and let the person tell you what you may do to be helpful (for those who cannot tell you, read body language/cues for removal of assent).

- Treat adults as adults. Use a typical tone of voice, just as if speaking with a friend or co-worker. 

- In general do not assume a person can’t read, but also don’t assume they can.

- Speak to the person directly, not the support person, parent, or companion. 

- Don’t assume a person who has limited or no speech cannot understand what is being said around them, or to them. People usually understand more than they can express. 

- Never pretend you understand what is said when you don’t! Ask the person to tell you again what was said. Repeat what you understand. 

- Do not try to finish a person’s sentence, or cut them off. Listen until they have finished talking, even if you think you know what they might say. 

- You might not be able to see someone’s disability. All disabilities are not visible. There are many disabilities that are hidden within a person. 

- Avoid using stereotypes in your thinking. We all have different personalities and our own ways of doing things. To find out what a person prefers, ask them directly (when possible). 

- Offer compliments but avoid giving a lot of praise when people with disabilities do typical things. 

- Avoid speaking for others. Encourage a person to speak on their own behalf. If you must restate something, be careful not to change the original meaning.

- Be mindful of your body language, tone of voice, and other gestures that may influence a person’s decision/desire to please those in authority. 

- A support person should be low-key, almost “invisible” to others. Don’t “over-support.” 

- Let a person make their own decisions. Don’t take over and make decisions for them. It can be difficult for some with disabilities to make quick decisions. Be patient and allow the person to take their time. 

- Focus on what a person CAN do, instead of hyperfocusing on deficits. 

- Find ways to include a person in a conversation. Do not talk about the person to others as if they’re not there/not in the room.

Link to Reference: Curriculum for Self-Advocates

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Tameika Meadows, BCBA, Blog Author