The First Responders for Autism

 

There’s nothing like a good Speech and Language Pathologist (SLP) to identify a child with autism early, usually before anyone else!

SLPs are often the first professionals to see a child with autism because the child is not developing language in a typically developing fashion. SLPs often recognize autism immediately due to the symptoms of the disorder that include echolalia, delayed echolalia, lack of joint attention and general lack of communication.  Due to their expertise, SLPs can be crucially important in getting parents to act quickly on early intervention.  However, SLPs frequently find themselves in a quandary: they know something is amiss but they are not diagnosticians. Unless they are credentialed in diagnosing childhood disorders, they are not allowed to render a diagnosis of autism even when red lights are flashing. 

I have seen this situation all too often.  It’s so common that after the diagnosis, parents actually complain about the fact that no one – including the SLP who first worked with their child – ever told them that their child may be afflicted with autism. I’ve heard many parents say, “if I could only get that lost year back.”  

I would like to strongly encourage SLPs to let the parents know if there are greater concerns about the child’s language development and suggest that the child may benefit from an intensive treatment program.  If the SLP is allowed to use the “autism” word, they should!  If that’s impermissible, then they should encourage the parent to visit a local developmental pediatrician who is known to diagnose autism quickly, and accurately.  In order to find that pediatrician, I would contact the local Families for Early Autism Treatment (FEAT) or ABA parent group in the area, and ask for the name of the best diagnostician in town.

It is one thing to have this information and quite another to communicate the information in an effective manner. To that end, I would suggest the following words:

“I am very concerned about Johnny, and Dr. Jones is a pediatrician who will very quickly be able to tell you if you need to have your child in an intensive treatment program for this language delay.  Dr. Jones will have excellent advice about what we need to do to help Johnny.  Obviously I can work on your child’s language and communication skills, but I want to make sure that we give your child the best start in life and I want to make sure that he reaches his full potential. The way to do this is through an assessment by Dr. Jones and possibly an intensive treatment program.”

I would also source the name of the best local psychologist who can diagnose the child. The local FEAT or ABA parent group should have the name of this professional.  In addition, a good SLP should find out who in the area is a Board Certified Behavior Analyst (BCBA) who provides Intensive Behavioral Treatment (IBT) for autism.  Armed with this knowledge, the SLP’s next step is to ask the parent group how parents in the area are funding the treatment.  Depending upon jurisdiction, there may be laws protecting the child’s rights to treatment. The local FEAT type group will have this information. 

Here’s the list of the steps an SLP can take when he or she is working with a child they suspect may have undiagnosed autism:

1) Find the professionals in your area who a) can provide a quick and accurate diagnosis e.g., pediatricians & psychologists, and b) are excellent practitioners in intensive behavioral treatment (e.g. BCBA)

2) Parent Group: a) find the parent group in your area that supports ABA (FEAT or FEAT-like organizations), and b) find out where and when they meet.

3) Sleuth out the funding agencies or insurance plans that pay for the treatment and find out how parents can best access these funds.

4) Create a New Parent Packet for information to give to these parents (or use the one that the local FEAT group provides)

Here are some tips to think about when an SLP is delivering the message:

  • Stay on topic

Parents are having a very difficult time and may want to talk about a variety of issues relating to their child including behavior and sleep problems, nutrition, and severe potty-training delay. The SLP’s answer should always go back to the fact that a quality intensive behavior program will target all these issues and that is why you are giving them information to help access a quality autism treatment program. Give parents the name of the best behavioral consultant in town a.s.a.p.! 

  • Don’t let immigrant status, poverty or lack of resources get in the way of helping these families access behavioral treatment programs.

With some immigrant families it can be difficult to communicate due to the language barrier; however, the local FEAT-like parent group will probably have a parent who speaks their language and can act as a mentor of sorts.  The key is to get parents hooked up to the parent group that does Intensive Behavioral Treatment (IBT).   As an SLP “first responder,” I would keep hammering home the fact that I would like to see the child in an intensive treatment program and then strongly suggest that the parents contact the organizations and professionals that I suggest.

If these folks have limited financial resources and are on a services wait list for several months, I would strongly recommend that they contact the local ABA parent group, which is free.  There they will meet other parents who may help them find a way to get an earlier diagnosis.  

  • Ignore SLP colleagues who claim that everyone needs to take their own journey to come to the realization that their child has autism.

It’s amazing how motivated parents get when they really understand what is at stake.  I have seen immigrants with no money but a large extended family set up therapy programs.  Lots of sophisticated “experts” in the field actually attempt to keep this information from parents who are poor because they don’t want to show them something they cannot have.  I think that type of attitude on the part of professionals is the utmost in arrogance and is very harmful to the child.  

In short, you as an SLP have the power – and 1st responder insight – to speed up the diagnostic process considerably. Use your power for good!

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Sabrina Freeman, Ph.D. on Twitter
Sabrina Freeman, Ph.D.
Sociologist (Ph.D. Stanford '95), autism advocate, author of several books & a DVD on autism, mother of an adult w/ autism, founder of FEATBC in '96.
Sabrina Freeman, Ph.D.

Sabrina Freeman, Ph.D.

Sociologist (Ph.D. Stanford '95), autism advocate, author of several books & a DVD on autism, mother of an adult w/ autism, founder of FEATBC in '96.

0 thoughts on “The First Responders for Autism

  • August 6, 2012 at 2:55 pm
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    @NeverSubmit@xanga – Good point.  Please submit posts to Autisable about that.   

    Early detection/diagnosis helps parents plan for the best course of action for the individual with Autism.From a personal note on my son’s diagnosis, it took two years of fighting and screaming with doctors and speech therapists to finally seek out a diagnosis from somewhere else.   That’s two years of no diagnosis and no plan of action to help my son (and us) find what we needed to do to reach him – to who he really is.   With delayed diagnosis, we now are way behind on helping him and it’s much harder for him than if we had early detection/diagnosis.  
    I do agree that there needs to be more awareness on how to react/respond to those with Autism – but it is only through people that volunteer those tips that we are able to adjust our actions.   
    Again, please submit a post about this to Autisable, we’d love to know your thoughts more on this subject.
    I know that if it wasn’t for people such as Temple Grandin sharing her perspective, many in the general public would still react like they did 50 years ago and put people with Autism in an asylum.

    Reply
  • August 6, 2012 at 2:05 pm
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    I really don’t get the interest in “early detection!!!(tm)!!oneone.”  For so many of us, the problem isn’t the people who don’t know that we have autism, but the people who do.  Just once I’d like to see someone focus on how to actually behave around an autistic person.  Why can’t we have a flood of awareness about that?

    Reply

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