My latest interview is with Carol Greenburg. She has the unique perspective of both an indiviual with autism and a mother of an autistic child. Here are the questions and answers from the interview. I enjoyed getting to know Carol and her child so much, that I also conducted a second interview with her on the subject of vaccines and therapies. That will be posted tomorrow.
1. As an adult with Asperge’s Syndrome and a mom of an autistic child, you have a unique perspective. Do you think you understand your child better than most autism parents?
I feel I do understand my son pretty well, though I have no basis of comparison to the level of understanding between other mothers and sons. I can say that I think my own Asperger’s gives me a bit of an edge in what I decide to worry about and not worry about. I often observe self-stimulatory behavior in my son that exactly mirrors the stims I used for self-calming at that age, and am therefore less likely to overreact and automatically block “odd” behaviors. I believe that moment of thought before saying “Stop it” makes for a more relaxed environment in our home. If he starts singing the same song over and over to himself, which is one of the stims I had at his age, but no longer do, I try to engage him rather than just telling him to stop, which leaves me at least feeling good that I just had a nice interaction with my son rather than frustrated that I can’t make him behave in a more typical way.
2. Getting services for your child can be extremely difficult for most autism parents. What do you recommend is the first step in attaining services for your child?
As a special education lay advocate, I feel duty-bound to answer that by simply advising everyone to hire me
3. What kind of services/therapies do you think are an absolute necessity for an autistic child?
I’ll say the same thing the law says: The child gets what the child needs. Children and their needs are completely individual and they change over time. My son and I are both on the autism spectrum: I had no speech delay. He has a severe speech delay. He needs as much speech therapy as we can get him. Speech therapy would have been a complete waste of time for me at his age; all I did was talk. But I was constantly saying the wrong things to the wrong people. What I needed was the kind of social skills intervention, he’s already gotten. At only seven he’s immensely popular, never been bullied, and thanks to all of the OT he’s gotten, he’s actually more of a jock than anyone in our family going back generations.
4. Who pays for these services? The parents, insurance, school? When should parents draw the line at paying for therapies? Do you believe that it is fair on them and the child to be bankrupt and to lose their homes in order to support therapy for their child? (I’ve heard from parents that think it is and those who think it isn’t.)
I don’t feel I could function as an advocate and say I believe parents should foot the bill for everything. First of all, that’s simply impossible in most cases. I don’t personally know anyone rich enough to pay for the level of service my son gets without reimbursement. However, there are times when parents, who are fighting the good fight as they should, do need to pause and ask if they’re looking for money from the best possible sources. True, your child has the legal right to a free appropriate public education, which encompasses much more than most people realize. That does NOT, however, mean that your automatic response to any need should be to hold out your hand to the local school board. Medicaid and medicaid waivers are overcomplicated to get, which is probably why they’re underused, but if you can get your kid into that system, it opens up a world of resources. In the end, schools are more open to the requests of parents who also look elsewhere for funding. As far as insurance is concerned, you can’t count on it, but you should be able to. The total lack of coverage for autistic children is a national disgrace, so if you have any energy left over from fighting for your child’s individual needs, I can’t think of a better cause than autism-specific insurance reform in which to pour that energy.
About Carol Greenburg
I am an adult with Asperger’s Syndrome, the mother of a seven-year-old severely language-delayed autistic child, and executive director of a consulting company that helps parents of children with disabilities in get services for their kids. As part of a partnership with the Brooklyn Parent Center of BCID, I speak frequently at parent support groups, community-based organizations, and at universities all over Brooklyn. The motto in our home, and office is “Not sick. Not Broken. Just Neurologically Outnumbered. To find out more about me, my family and my work, please visit my company website www.bklynsnc.com, my company’s Facebook page at Brooklyn Special Needs Consulting, or follow me on Twitter under the username “Aspieadvocate.”