What are the chances of my PDD-NOS preschooler eventually joining the mainstream?
Our daughter, 3.5, has been in therapy for developmental delays since the age of 14 months; we got a diagnosis of PDD-NOS about a year ago. She currently attends a special needs preschool. She is verbal, but her speech is stilted: she cannot have a conversation, and all utterances are either requests or narration. She does not ask any questions yet, and her social skills are extremely delayed, as are her fine motor skills. Gross motor is delayed but not as badly. Focus and attention to task is very hard for her; sensory issues cause her to be in near-constant movement.
In addition to the SN school setting, she receives speech therapy, PT, OT, play therapy, and 10 hours of ABA. We have not tried any biomedical interventions aside from fish oil supplements, as per her developmental pediatrician. We expect her to be in special education for the foreseeable future, but it gnaws at me constantly to think that she may not be able to live independently or someday join the mainstream.
My response to your question is a composite of my own thinking and experience, and research in the field of autism/PDD.
Continuing with effective and intensive intervention programs can make a huge difference in the outcome for your daughter.
The current thinking in the autistic community is that autism is a puzzle to which we do not yet have all the pieces. Our children are also like the pieces of a puzzle which need to be connected together to make a fully integrated, unified child.
YOu are already using ABA to help create structure and meaning and build upon your daughter’s strengths and abilities. The highest levels of success with ABA are achieved when a child receives at least 30 hours a week of one-on-one therapy. ABA- type therapies have been statistically shown to improve the prognosis of virtually all autistic children, so if you can increase ABA I would do it, making sure, of course, that the therapist is a very good one. (I did not really believe in the benefits of ABA until my daughter started working with children and youth with autism.)
Additionally speech therapy is of utmost importance – continue with as much as possible. Prognosis is markedly better for individuals who develop some meaningful verbal language before the age of 5 years.
Keep your daughter as engaged in the outside world and stimulated as much as possible during the day in activities that provide an external structure for building meaning, comprehension and organization. Provide ample opportunities for her to use new behviors she learns in real life situations.
As you know PPD-NOS is a life-long disability. There are no cures, and even those individuals who proclaim themselves “recovered” continue to have difficulties with subtle social processes. The most accurate predictor of outcome is the amount of progress over a period of about 1 year from early diagnosis. However, with advances in education, early intervention, and research, today individuals with Autism/PDD have a greatly expanded range of outcomes as adults. Current trends, based on increased knowledge of how to educate children with Autism and the importance of early education, emphasize building skills and abilities in order to prepare young adults with Autism/PDD to work, to live in the community, and in some cases, to pursue higher education. Outcome appears to depend on both degree of overall impairment and intensity of educational interventions.
Systematic and intensive educational programming can make a huge difference. You will have to specifically teach your daughter many of the things other kids may learn vicariously. But most likely she can learn many of these skills. Unfortunately not enough is known about PDD to accurately predict yet how individual children will progress. As your daughter gets older better prediction will be possible.
Before your child reaches school age search out the best schools to address her needs, as not all schools deal with your daughter’s type of issues well. Try to make sure when she starts school that she is placed in the highest functioning environment possible so that her skills will be enhanced. Continue to focus strongly on the language and social issues.
I am not aware of any findings that suggest biomedical interventions make a difference.
If you are in the US become very familiar with the Individuals with Disabilities Education Act (IDEA) to be sure you understand your rights and your daughter’s rights.
Your daughter is very fortunate that she has had such early intervention and a wealth of it.
I have included some links which you may already be aware of. I hope these thoughts are of some help to you. YOu sound like you are an excellent advocate for your daughter. That will make an immense difference to her progress and her life.