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Waves of Communication
5 Reasons Why Your Late-Talking Child May Be
Misdiagnosed with ASD - And How That Can Cause Problems In Future Communication.
Written by Marci Melzer on March 30, 2018
This may not be what you have heard out there before, but here is the truth:

Many children are misdiagnosed with ASD, and here's how I know.

Over my 30 years of clinical experience as a speech-language pathologist, I have watched hundreds of children, who have been given ASD diagnosis, learn how to use words effectively and eliminate many of the behaviors that caused them to receive it.  Many of these children caught up to their peers in language by early elementary school.  In fact, I'll say it is the majority.

There are new modalities reported all the time with success stories where they have been used to "cure" autism for some children.  In actuality, methods like chiropractic, diet modification, psychology and energy healing work are addressing the underlying issues that cause the autism characteristics.  When these physiological and emotional issues are resolved, the autism traits dissappear.

So how, and why, does ASD misdiagnosis happen? Here are 5 reasons.

1. Late-talking kids are consistently… inconsistent.
Many late-talking children, in addition to their communication delay, also display classic "Red Flags" or behaviors that resemble disorders such ASD. It is common to see sensory issues, social avoidance, jargon speech and flapping/rocking behavior in late-talking children.  The reality that I have observed first-hand, is that MOST late-talking children (60% or so) who get this label, also display behavior, like amazing joint attention, great social skills (even if they are selective) and wonderful problem-solving.  These skills actually contradict the ASD diagnosis.  Parents report that evaluators often give kids, who show amazing ability to learn new things, "high functioning" ASD diagnoses, because of their behaviors and speech delay.  

2. Late-talking kids operate on their own terms.
Late-talking children, are excellent at avoiding anything they don't want to do.  This applies especially to having to “talk” to anybody, especially people they don’t know. They may shut-down in the evaluation session or display atypical behavior, as a result of anxiety. When standardized tests are used, the evaluator can only score the behavior that they see on the day of the evaluation.  The evaluator then reports the child can’t perform a skill, rather than understand that the child simply didn’t want to. Evaluators will give the ASD diagnosis based on the scores of the tests they administer.  

3. Evaluators develop a bias toward ASD diagnosis.
Some evaluators are either consciously or unconsciously biased toward ASD diagnoses, and as a result of their experiences, their clinical interests, or financial reasons.  Bias happens when the evaluators are "looking" for a diagnosis, instead of objectively evaluating a child's developmental skills.

A facility or professional that is highly specialized in working with children who have ASD, or a who has developed a special intervention program to target kids with ASD are going to be biased to look for signs that the child "fits their criteria".   Evaluators with bias may be inclined to miss or even disregard positive behavior characteristics that would contradict the diagnosis of ASD.

Also frequently overlooked are the hundreds of other childhood medical issues, such as ear infections, that commonly cause speech delay and behaviors which resemble red flags for ASD.  

Parents may contribute to evaluator bias by seeking an ASD diagnosis because of financial reasons. This happens because the insurance coverage, scholarship, or therapy program the parents have investigated may only available for children with an ASD diagnosis.  So parents pursue ASD diagnosis to fit the intervention they think their child needs.  The whole structure of this evaluation process is biased toward getting a label of ASD and not finding out what is really the cause of the issues the child is displaying.  

4. The goal of the evaluation is identification and/or placement.
In the case of schools, the primary reasons for the evaluation are to benefit the school, not you as a parent.  School evaluations are completed for the following reasons:
       
A. Give your child a label so they can qualify for services and/or funding (ASD gets the most funding)
B. Identify the educational placement that best fits that label

It is important to note that the criteria school districts use for labeling children’s area of difficulty is independently established for each state in the US, and can even vary between districts in the same state. They are not the same standards as in the medical profession, however some private schools do require a medical diagnosis of ASD to confirm their funding.  

5. Pressure for early identification and intervention with ABA/PECS.
The information from the autism community consistently indicates that highly intensive and highly structured intervention like ABA and PECS are the best ways for children to learn language.  Children who can reportedly benefit from these modalities display any of a myriad of the list of possible ASD characteristics to learn new communication behavior. Most information suggests this therapy should  should begin as early as 18 months old, or before the child's second birthday. 

Let me make this point very clear. Early intervention is key to overcome communication issues. This is because non-verbal communication habits easily become habitual for children and parents, and once developed, they can be difficult to overcome.

While ABA and PECS can help children learn to use words, I have observed first hand that intensive intervention using these modalities can actually be harmful to children who are misdiagnosed, and long-term use can create lasting damage.

ABA and PECS are designed to intensively retrain non-verbal communication habits by replacing them with highly structured replacement behaviors that are taught in a controlled environment. There is no focus on development of natural, social communicaton exchange in everyday situations, because that is restricted in this environment. 

Children ultimately learn specific new words and behaviors in the therapy setting, and still resort to their non-verbal communication habits other times. So, parents end up continuing to positively reinforce the undesired non-verbal communication habits the child is using without realizing it.  When a child is upset and can't communicate why, parents naturally encourage them to use whatever communication they can problem-solve on the spot to understand their child's message.  The phrases the child learned in therapy to request what they want, are not helpful to help them calm down.  

Over time, the problem actually gets worse, instead of better.  I have talked with many families who have had their children in ABA for years, and have found their children at 6-years-old, unable to communicate effecitvely at all (except to request) outside of that environment.  Parents habitually accomodate their child's non-verbal habits or avoid difficult situations completely, just to keep the peace.  As a result, kids don't develop the skills necessary to adapt to different places and people, including siblings, and they don't develop natural conversation about their feelings and ideas.

Some children are actually traumatized by being forced to sit, the intensity and structure, and by the focus on elimination of their emotional coping mechanisms like hand flapping or other behaviors (that didn't interfere with communication.) Many older children have reported feeling extreme anxiety about therapy from the worry of "doing it wrong" (which is actually negative reinforcement.)

If you have a late-talking child, who displays "characteristics" of ASD here's what you can do.

1. For an accurate diagnosis of communication ability, a speech-language pathologist should use multiple forms of information including parent interview, observation, and testing. If the diagnostic report you receive has information that you do not think is true, you should challenge it.  If the clinician tries to convince you that what they report is true, even when you have doubts, they may have unconscious bias.

2. Carefully consider all long-term implications of any recommended intervention, and consider getting a second opinion at a different facility if you have doubts.  Ultimately, the goal of any evaluation should be to determine the best course of action for intervention to solve the ROOT of your child's communication issues.  Lots of medical issues look like ASD, and medical issues should be identified and addressed primarily, because no child can learn effectively unless they are feeling well consistently.

3. Choose interventions that are FUN for your child.  Children learn naturally via play and if your child is not enjoying their therapy time, then it is time to move on.  If it isn't fun, it isn't fun.

4.  Make sure the intervention you choose has a component of parent training.  The only way you are going to change those non-verbal communication patterns in your daily life is by approching them from a problem-solving perspective.  Use your therapists as resources to help you facilitate language in natural ways throughout your day.  The more intervention you do at home every day, the faster your late-talking child will catch up. 

Marci Melzer M.Ed.-SLP
Intuitive, Speech-Language Pathologist

Marci is an intuitive speech-language pathologist who has practiced in families' natural environment for 30 years. Now, she has an online coaching program for parents of late-talking children called Waves of Communication. Marci believes that there are many late-talking children who are reluctant to use words because of their ability to teach parents how to understand their non-verbal communication. Often these children are misdiagnosed with labels that are tied to intervention practices which are not appropriate. Waves of Communication helps parents teach their late-talking children how to start using the words they need, to share the important messages they have for the world.
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