What do you think of the available treatment options for people with Autism Spectrum Disorders?

Question

As a provider of privately funded support services for people with Autism Spectrum Disorders I am very interested in what parents/carers/people with ASD consider to be most helpful and most frustrating about the services they have received in the past.

Answer 1

More government funding to allow the needed therapies for people with ASD. I care for my 14 year old niece and we struggle all the time. People even teachers taught as special education are not properly trained about ASD. I am luckily involved in a fantastic organisation where we fund education and support each other. Many families are so isolated as relatives, friends, and the public see them as naughty or with no intelligence. The department we deal with are overworked and have little if any insight into what families go through. Even other organisations who deal with children/adults with special needs do not see ASD as a disability and are reluctant to help.

Answer 2

I'm 28 and have Asperger Syndrome. As you know, there was little to nothing available back in the 80's. I wasn't diagnosed until I was 19. I had AIT and it didn't help with my auditory sensitivity at all. My Grandparents paid the 1K that my mom nor I could afford. There isn't anything else that I know of for autistic adults in Illinois. We can rot in h**l for all our lawmakers care. I see a therapist and take psych. meds. My therapist is trying very hard to get my county's health board to cover yet another impossibly expensive therapy covered. It's for people with tinnitus and hyperacusis. Hyperacute hearing is a sub-category of hyperacusis. What it means is sound-sensitive to sounds heard at specific frequencies. This therapy is called Tinnitus Retraining Therapy (TRT) and costs $3-4000 w/o the consultation fee and hearing test to see if I qualify. I badly need help as I am housebound and jobless. My mom is 69. I've spoken @ length about this on my You Tube channel. If you wish to check it out go there and put "autisticaplanet" in their search engine. I have a question to ask you-can you help me? I am reachable by e-mail here and @ You Tube.

Answer 3

The major problem is that ASD is different in every person, so one treatment may show great efficacy with one person and be completely ineffective for another.  This makes it extremely difficult to find the proper therapy.  Moreover because of this it makes it easy for insurers to discredit therapies and thereby to cover them.

For instance, the GFCF diet which works for some folks had no effect on my daughter.  I know it works for some because I've seen the results, but the insurers and the medical establishment can just well, it must be something else because it doesn't work for everybody.  

As for individual services the most helpful has been Respite Care so that the family can get relief and some degree of "normalcy" with other members of the family who are not affected by ASD.

The most frustrating thing is getting funding for therapies such as OT, PT, ST, ABA, RDI, DIR, SCERTS etc.  Which are rarely covered by health plans.

Don't even get me started on the schools.

Answer 4

My son is mildly autistic, he was diagnosed at a year and half old. I immediately enrolled him in the Early Intervention Program. They provided speech, physical, and occupational therapy. Which all helped but not much, so after 6 months of no change he qualified for ABA therapy(Applied Behavioral Analysis). That helped him unbelievably... at the age of 3 he started in a pre-school disabled program, and I still kept up with a private ABA therapist. ABA can be frustrating and stressful for both him and I, but it's the one that has helped the most along with school. Now he's almost 4 and thank God it's so hard to tell he's autistic, no one believes me when I tell them. So thanks for the opportunity to share my son's autism, hope I answered your question, and also thanks for your supporting ASD.

Answer 5

The most frustrating thing is that once diagnosed there is no network and it takes years to get through all the research and start implementing it.  Equally frustrating is the cost of therapies.  The most helpful therapy we have done was homeopathic detox, cost 3000, and a sensory diet.  I would love to do the tinnitus retraining 4000+ dollars and have my son screened for Irlen Lenses.  I would love to do a full neuropsychological evaluation but these cost 2500.  I wish we could afford social skills training like collage, or prompt in play.  We have spent 10000 dollars on our oldest son, when our second son was diagnosed autistic and we paid 24 thousand dollars in fertility treatments to get him.