The Bravermans are having a baby! How exciting! From the look on Adam’s face in the final episode last spring, it was a real shock to both Adam and Kristina at first. Now they, as well as the whole Braverman family, are delirious with joy that Kristina will be having a baby – and soon! But underneath, there is tension and, like many families in similar situations, real fear as well.
Kristina and Adam know the statistics for having a second child with an autism spectrum disorder. The latest research study (Ozonoff, Young, et al., 2011) released just this August in the journal Pediatrics reveals that the chance of having a second child with an autism spectrum disorder is 19% (previous rates were stated between 3% – 10%). Since four out of five individuals with autism will be boys, is it any wonder that Adam and Kristina are hoping for a girl?
Learning that they are having a baby girl lessens the tension but probably will not totally eliminate it. The research in heritability of autism in families is difficult to ignore, and Kristina and Adam face what other families face when they already have a child with autism spectrum disorder. Some families that have a diagnosed child with ASD will choose not to have a second child at all – in research, that’s called the “stop factor.” To put it plainly, they stop having children.
And that is sad. Because each child – whether they have autism or not, and whether they are the first, second, third or more child with an ASD – should be a joy to behold. For families that have a child with autism, the family gets an extra package – a child that has a very unique way of looking at and reacting to the world. Individuals with ASD offer so much to our world – to parents and professionals alike. Too often, the world only sees the “downside” to autism: the lack of verbal language, the inappropriate behaviors, the social isolation. Professionals (like myself) hold days-long workshops on ASD, outlining the characteristics, teaching strategies and methods to reshape inappropriate behaviors, and how to ameliorate the symptoms of autism. But shouldn’t we be holding days-long workshops on what those with autism bring to our society? The joy of seeing progress, the huge rote memory, the insatiable curiosity, and the pure innocence that catches us unaware and makes us all humble?
Yes, it is a present fear that a family will have a second or third or fourth child with autism (and there are some families in this nation that have more than four children with ASD), and pediatricians and family physicians should be referring the family for genetic testing and counseling, so that the parents can make informed decisions for themselves and for their family. Although there is no definitive genetic marker for autism at this time, current studies are getting closer to capturing its elusive causes. Someday, there will be answers. Families who have a child with ASD (regardless of how many) should be referred for genetic testing, since other, underlying conditions can be identified (which may explain behavior and medical difficulties mimicking autistic behaviors) such as Fragile X, metabolic disorders, Rett’s Disorder, etc. In fact, genetic testing is a procedure that families may want to repeat every 10 years or so, since breakthroughs can happen (and are happening) at any time and in any number of disabilities and conditions.
Should Adam and Kristina be fearful? Not really; the baby is coming regardless of whether she has autism or not. A bit worried? Yes, probably, and totally understandably. But this is a strong family, and the love of their children is deep; they will love this little girl whether she has an autism spectrum disorder or not.
And she couldn’t be born into a better family.
Written by Sheila Wagner, M.Ed.
The High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.
You can find more information about these findings here:
You can watch the full episode of ‘Hey, If You’re Not Using That Baby’ here.
Kristina and Adam make the difficult decision for Max to attend a different school as a mainstream student. They both try to prep Max on how best to make friends – look people in the eye and smile and shake hands.
Max’s teacher Miss Mikindoe is giving an assignment when Max loudly calls out his neighbor for writing in her book. When Max won’t let it go, Miss Mikindoe points out that talking out in class is also against the rules. The lesson continues, and Max continues to offend, talking out of turn and correcting other students. And why does he have to raise his hand? Max finally settles down, but sadly, the damage is done, as his classmates begin to make him feel like an outcast.
Max is trying to make friends by looking kids in the eye, introducing himself and extending his hand to shake. Unable to understand why this technique isn’t working for him, a frustrated Max sits down to eat lunch by himself.
Kristina stops by Miss Mikindoe’s classroom and literally begs for a few minutes of her time after not getting a response over email. Within seconds, Kristina’s in tears, describing her worry and the spying incident. Miss Mikindoe reassures her that everything’s going to be okay – but Kristina is going to have to get comfortable with having a little less control.
Kristina visits Max’s teacher for reassurance on the decision to mainstream Max. Click here to view the clip.
Many parents struggle with the decision to mainstream their child. What has your experience been? Can you relate to this?
Have you or your child had difficulty making friends? How do you cope?
Simon Wallace answers, “My child has joined a ‘mainstream’ classroom but is struggling. What can help?” Click here for his response.
In this week’s ‘Experts Speak,’ Roy Q. Sanders, M.D. expresses, “I want teachers and other school personnel to know that parents know their children better than anyone else. The parents are the experts on their child. And I want parents to remember that – even though you may feel intimidated – as parents you have the most knowledge about your child. You are really running the show. You are the expert. Don’t ever allow anyone to take that power away from you.” Visit here for more.
School Community Tool Kit: A tool kit to assist members of the school community in understanding and supporting students with autism.
We are so thrilled that Parenthood has returned for Season 3! The Braverman’s left us with many cliffhangers and we have been eagerly waiting to see how everything pans out!
If you missed the first episode, you can watch it online here.
We would love to share this clip with you all. Jason Katims and the Parenthood writers discuss their process and the birth of the character of Max.
* Unfortunately we were unable to add the video to our Blog, but you can watch it here!
Intense emotional experiences are difficult for people with autism/Asperger’s. This is very true when the emotional experience involves other people and is not related directly to the needs or desires of the person with autism/Asperger’s. In this episode, Max is unable to relate to the feelings Sarah is experiencing when Amber is in the hospital. Indeed, the disability in being able to connect with other people and to develop an understanding of how someone else might be feeling is difficult and at times even completely alienating. A patient of mine (and an avid “Star Trek” fan) once told me that “having autism/Asperger’s is like being a Vulcan living among Klingons.”
For those of us who are “neurotypical,” we generally get a feeling of connectedness, satisfaction, and comfort when sharing in intensely emotional situations – especially those involving grief and/or death. For people with autism/Asperger’s, they just don’t get those same positive feelings that reinforce the interaction. In fact, a person with autism/Asperger’s will usually find encounters with others who are sharing feelings and comforting one another to be confusing and even frightening. The whole process simply makes little sense to them, and there is certainly nothing that is pleasant or reinforcing about the situation. Trying to get a person with autism/Asperger’s to understand and empathize is to reach the very core of their disability: social and emotional connectedness is the very thing that they are unable to do, or at least not able to do very well. Teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).
That being said, there are ways that people with autism/Asperger’s can learn to at least approximate feelings of empathy and compassion. With social stories and direct interventions in specific social situations, as Adam attempts to do with Max in this episode, people with autism/Asperger’s can at least “learn the rules” for how someone “should” act in an intensely emotional situation. When this goes well – when they get the rules correctly – they can feel a great deal of satisfaction with themselves for “getting it right.” As much as they don’t understand why people feel a certain feeling, they do often care if people respond to them in an odd or hostile way. When the important others get frustrated, disappointed or even angry with the person with autism/Asperger’s because they are not empathetic or “understanding” someone else’s point of view, it changes how that important other would generally interact with the person with autism/Asperger’s – and that’s confusing and scary.
When Frankie was very young, we began to intervene and attempt to teach the appropriate response to him when he was in a situation where he should clearly be expressing some empathy but “just didn’t get it.” This meant that we had to be vigilant about monitoring his interactions with others. It also meant we had to be ready to step in whenever there was a situation that provided a teaching moment. For many years, Frankie would not follow through independently on any of our “examples.” Eventually, he began to respond to situations in which he should show some empathy but in a very scripted way. Nonetheless, we would reinforce with praise and attention. As time has passed, Frankie has continued to respond in an almost appropriate way to situations where he should show empathy but he is clearly not directly impacted.
Like everything else with autism/Asperger’s, the key has been the intensity and persistence of the teaching. At this point, Frankie may even feel some semblance of empathy, but I know that he will never receive as much from these interactions as I do. I am grateful that at least at this point he, like Max, can feel good about himself and experience others feeling good about him as he struggles to connect socially in a world that often makes little sense to him.
Written by Roy Q. Sanders, M.D.
Visit our Topic of the Week, ‘How do you manage meltdowns?‘ to hear from the community.
NBC’s Parenthood is one of our favorite shows on television! We have had weekly discussions on our blog about different topics that the show touches on, primarily in coping with Max’s Asperger’s Syndrome. So much has happened this season and the finale is upon us – we want to celebrate!
Autism Speaks is going to give-a-way a Parenthood script signed by the entire cast and you can be in the running to win!
All you have to do is tell us on Twitter, ‘How has the television show ‘Parenthood’ affected you?’
Your Twitter Handle will then be entered in a random drawing to win the signed script!
Be sure to tune in to NBC tonight at 10pm EST to watch the the finale of Parenthood!
Fearing the worst, Adam and Kristina meet with Dr. Robertson, the principal of Footpath, Max’s school. But the news is good, great even. Max is doing so well, they’re having to look for new ways to challenge him in the classroom moving forward. In fact, Adam and Kristina might want to consider transferring Max to a school where he can reach his full potential both academically and socially – i.e. mainstreaming.
Have you mainstreamed your child? What has your experience been? Did your child grow academically and socially?
This week on Parenthood, ‘Qualities and Difficulties,’ Adam and Kristina sit down with Max. Now that the cat’s out of the bag, Max wants to know about autism – what is it? Adam starts off talking about disabilities, and Kristina corrects him, but their explanation isn’t anything Max can really understand, and his lack of response triggers his parents’ emotions. Asperger’s is tough to deal with but they will, and no matter what happens they’ll always love him. And no, no one else in the family has it, only Max. When Kristina starts crying, Max asks to go to his room and runs off. Adam tries to give Kristina some support, but she tells him to stop and dissolves in a puddle of sobs.
In this clip Adam and Kristina make an appointment with Dr. Pelikan to discuss telling Max about Asperger’s.
How do you react to this clip? Do you agree with Dr. Pelikan’s advice?
To watch full episodes of Parenthood visit here.