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Getting An Official Diagnosis

Getting An Official Diagnosis

Mine is kind of a long story but I'll try to be brief. My son, who is a fraternal twin, has been in EI since 6 months of age because he and his brother were preemies. He got PT first, then ST, OT and educational services as he got older. All along, his therapists and teachers never thought he was on the spectrum. At age 4, last summer, we finally got a full comprehensive evaluation at a local university developmental center. The diagnosis was "neurodevelopmental disorder with speech and motor… read more

A MyAutismTeam Member said:

I agree with evak77. We did get an official diagnosis for our 2 kids (our youngest has more obvious issues than the other) and it helped tremendously with school, even though we still had to fight for it. We have an Autism program in our school. My daughter is exceptionally bright and was in all Pre-AP classes at the time we were trying to get her into the program. Because she wasn't failing and wasn't in regular classes, they initially wanted to deny her placement in the program. She had to be reevaluated by the school district "experts" , lots of meetings and a lot of paperwork had to be done by us and doctors, but was ultimately placed in the program. Had she not had the official diagnosis previously, it would've been a harder road to battle--as was the case with another child that is in her class.
Someone from the district told me, off the record, that the district has to use more money from the budget for each child requiring more needs so they don't make it easy for just anyone to have access. It makes me feel bad for the children who's parents don't know how to "fight". So again, I feel an official diagnosis helps that battle tremendously.

posted about 9 years ago
A MyAutismTeam Member said:

a nuerologist is a good way to start if you have not already gone to see one, they can generally tell when others have missed things. Lables do sometimes make a difference from state to state so you have to check to se if it makes a difference there. the thing I can tell you is that sometimes age makes a difference to, and if you have a certain lable the treatment is only good until a child reaces a certain age and then you do not get it anymore. Gettting an ASD diagnosis sometimes eliminates this problem because it is considered a lifetime disability so the services continue while the child gets older. When they get to be an adult that comes with its own issues, but that is a long way off for you. The other thing is make sure you have IEP meetings, and when the school wants to take away services fight for what you think your child still needs and do not let them take something away you think your child still really needs. Unfortunately everyone on here will tell you the fight is never over, you have to be hyper vigilant and never let things slide, that is the job of a parent with a disabled child.

posted about 9 years ago
A MyAutismTeam Member said:

I know a lot of developmentally disabled people since I volunteer in special olympics and am involved in advocacy for my son and others. Many of the different DD diagnosis have "similar" features and social delays is one of them.

The most important thing is getting INDIVIDUALIZED treatment based on your son's functioning NOT on his label. That being said, sometimes labels are useful in getting more services. But I know my son qualifies more on his level of function than on his label. You will have to check your various funding sources (waiver, etc) to see if it makes a difference in your state. In my state, it does not.

posted about 9 years ago
A MyAutismTeam Member said:

No matter what the diagnosis is it can change over time. It is good to have a child re-evaluated and they are truthful when they tell you that even with a child with ASD may lose their ST.

posted about 9 years ago
A MyAutismTeam Member said:

Often, diagnoses don't get done until a child is much older, sometimes as late as teens. This is especially the case when traits of one condition may be present but there are other things happening that are clinically much more evident.

My son wasn't diagnosed with ANYTHING until age 7, and then only ADD, from specialists at a teaching hospital. He didn't get his first autism spectrum diagnosis until age 13, from a pediatric neuropsychologist.

Now, at age 18, professionals finally have a clear picture, and he is diagnosed with PDD-NOS, schizoaffective disorder, cognitive disorder, dyslexia, and dysgraphia.

Don't think of diagnoses at ANY age as absolutes. They are only reflecting what diagnosticians/psychologists are observing (or not) at a particular time. "No autism" at one diagnostic does not mean that later on, a diagnosis won't be made.

The most frustrating thing about this as a parent is the desire to have the earliest professional interventions possible... and not getting any help... and not getting any help... because formal therapies and interventions are tied to labeling.

On the professional side of things, diagnostic criteria don't allow for mild situations. Too many kids outgrow delays, or have one condition with traits of another showing for a brief period of time, etc. This is why the Individuals with Disabilities Education Act (IDEA) has the category "Developmentally Delayed," which is a catch-all for kids up to age 9. Even then, at the last passage of IDEA, the criteria for DD was tightened and more kids are excluded.

Keep in mind that diagnoses are LABELS, that provide professionals, and parents, with toolboxes of strategies for dealing with things that are "outside the norm."

Professionals are bound to providing specific services for specific labels. Labels are only given when a situation is certain.

As a parent, you don't need a label to access and use strategies. If you see something happening, and you decide to use strategies related to a particular label, like "autism," and the strategies work, then celebrate your (and your child's) success!

Continue to pursue the help your child needs. As issues become clear, further labeling will help teachers and therapists support your child in school. Don't take "go away" for an answer, but also accept delays in diagnosis as a part of the process.

posted about 9 years ago
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