Diagnosis vs. no diagnosis
My two kiddos (dd 3.5yo and ds 17mo) are gfcf and on supplements and have hadtesting done. We have had no “official” diagnosis of autism. My dd was said tohave ADHD and a seizure disorder which she no longer has. My ds was said tohave reflux. My dd was nonverbal until last June (3yo) when she began to saysome words, We were trying to get her in to see a developmental ped. but hewould not see her and said she needed speech therapy not his services. So westarted on our own. I do not feel it is important and I am getting the help ofa DAN! doc. I hate to go to the dr that said he could not help her.Should I let it go and just stick with what I am doing? Is a formal dx thatimportant? Even if the kids had a formal dx I wouldn’t change what I was doingwith them.
Any thoughts on this?
This post tagged as: speech therapy, supplements, autism
Venetta Ambrosia said,
Wrote on November 9, 2006 @ 6:12 pm
Our DAN! doctor is one of the few doctors that have been able to helpus and encourage us. The point of spending any money on a professionalis to get an honest and informed opinion that can help you in some waymake better choices.
dx that important? Even if the kids had a formal dx I wouldn’t changewhat I was doing with them.
I think you answered your own question. If a formal dx would notchange anything (including care, access to public/private services,peace of mind, family support), then why spend the money.
I know I could not have helped my son alone. I needed the help of myspouse, extended family, friends, parents, teachers, therapists,professionals, doctors, books and conferences. The most importantthing I have done was to learn to watch my son and learn from him. Ithas shown us what diets, supplements and therapies worked best for him.I am always trying to learn from and share with others.
Melisa Schumpert said,
Wrote on November 11, 2006 @ 1:16 pm
Sometimes a formal dx is important, like if you are trying to getpublic services for your child. But I recovered my son without anydoctors OR public services, and I sincerely regret that I had him dxat all. All the dx has done is cause problems for me and for him.Once I eliminate the last of his virus issues, I will pursue havingthe dx removed.
Wesley Marske said,
Wrote on November 12, 2006 @ 9:58 am
The only advantage to having a dx is once they start school. If theyare delayed and need extra help, it is legislated that this must be provided bythe school system. Granted you have to push for it in some instances but theonly option if there is no dx is to pay for your own extra help. This can getvery expensive. Just my 2 cents worth.
Bethanie Milin said,
Wrote on November 13, 2006 @ 5:49 pm
I have one child with a diagnosis and one with not. There are prosand con with both ways and the decision really depends on their levelof functioning. I will just mention some things to consider whileyou try to decide.
My child with a diagnosis is low-functioning. Before the age of 3 hereceived services through the state and now gets it through theschool district. They pay for ABA, speech, physical and occupationaltherapy. He is in a special needs class with an aide. Hisdisability is very obvious due to his behaviors and being non-verbalat age 6. If he did not have a diagnosis, he would not have gottenthe services and his chances of recovery would be slim. I cannotafford to pay for therapy out-of-pocket.
My child without a diagnosis is high-functioning. He has somesensory issues, did not talk until age 3 but now at age 14, primarilyhas social deficits. I have always homeschooled him so there wasnever a reason for anyone else to know. Actually if he had adiagnosis, it may have been harder to homeschool if the schooldistrict wanted to fight it. I am glad he does not have a diagnosisnow that he is older. I don’t want it to be an issue when he looksfor work or tries to get medical insurance.
After my low-functioning son was diagnosed, the medical insurance atmy company was dropped on their anniversary date. Since I was headof HR, I asked why and was told because one of the employees was toohigh a risk. I tried to get new insurance for the staff but they allrefused because of that one high-risk employee (not realizing I wasthe one they were talking about). As a result, the staff was withoutinsurance until I left. It was a fairly small company. Whenever Ilook for a new job, I am afraid my hire-ability will be affected bymy high risk sons.
On the flip side, I know someone whose young son was self-abusive.He often had bruises from hitting himself. One time he was very sickso they took him to the hospital. The doctors there saw his bruisesand called child protective services. CPS suspected he was abusedand removed him and his older two siblings from the home. It tookabout 6 months to get their kids back. The boy was later diagnosedwith autism but if he had that diagnosis sooner, it is unlikely abusewould be assumed. I too had CPS called by a neighbor because of myson’s constant crying. Thankfully the agents felt we were goodparents - especially considering seeing how well-adjusted my olderkids are. Had I gotten a different agent, things may have turned outdifferent. He was diagnosed about 6 months later.
Having a diagnosis is unlikely to make a difference when it comes tothe physical conditions that go along with autism (digestive issues,yeast etc). Most mainstream doctors will not recognize these issuesas related to autism and I have seen some that are more resistent totesting because of the autism diagnosis (stating I am only asking fortesting because I am looking for a magic pill to cure my son’sautism). My NT son with digestive issues has gotten much quickerreferrals and testing done than my autistic son with digestive issues.