Frustrated by delays in Autism assessment

Nicki - posted on 11/06/2009

Hi Stacy! Hope everything is going well! I'm glad you are doing floortime! We did some of that, and play therapy, sensory integration therapy, aquatic therapy, and I did some ABA at home with him. I know ABA is contoversial in some places, but I found that it helped the most. There are common misconceptions when it comes to ABA. We still do some stuff with him and social stories too. He now looks us in the face most of the time (he is severely visually impaired as well so I think that has made it harder. It has only been in the past few yearsthat he recgonizes that he can see our faces.) As hard as it is to keep up with, it seems that a little bit of everything has helped Zac so far. You can start stuff at home with him even before the diagnosis..that's the pain in the ass part. i know you've been doing ALOT already, but you are right when you said that its hard to get the doctors to help. Even with the diagnosis the developmental pediatrician doesn't really help much. Look up in your area places that work with people with disabilities. They really do exist!! The hard part is finding them where you live! There are places that provide therapies after school and you can sign him up yourself even at this age and even before you get a medicaid service coordinator. Actually try to figure out what places provide the medicaid service providers and you'll find places for therapy!!

Lori - posted on 10/18/2009

It took about a year to get evaluations for my two boys and we had to drive five hours to another state for one. The diagnosis didn't change their therapies at all, but it did qualify my younger son for state services and prevented the state from stopping his services.

Becka - posted on 10/18/2009

Hi, it took me 2 years to finally get the right assesment for my son, I finally went to an agency that deals with childrens behavior and talked to the director who pointed me in the right direction of who Noah had to see, I am now working with that agency to get help for my son. Keep your chin up and press on you will get the help you need.

Alicia - posted on 10/18/2009

You were able to get on a wait list for home therapy prior to an official diagnosis? That's pretty amazing. We had to wait till after the assessment just to get on the list. We also have to pay for it. Well we get to buy Medicaid like it's a regular insurance policy because of Liam's diagnosis vs financial qualifications. We pay a monthly fee for Medicaid and they cover all his medical needs including the ABA home therapy. It's great that you have so many resources available. I know how frustrating it is to wait for the diagnosis. We had to wait months to. Just keep your chin up. It will happen and when it does you have services set up and ready to go. The waiting will be over. Just try to focus on that to help you get through the next weeks. And Keep Fighting. He's worth it.

Carol - posted on 10/18/2009

First thing to remember is to relax! It doesn't matter when the diagnosis will happen, it's a matter of how you, as the mother, is going to advocate for your child after the diagnosis is in place. If you want a proper diagnosis, patience is your best friend right now.

Stacey - posted on 10/16/2009

Thanks nikki, unfortunately the services for treatment of Autism in my area are quite limited, it seems there is only the special school and speech pathology. I am looking into other alternative treatments such as a naturapath or chiropractor (I have heard they do certain alternative treatments) My main interest for treatment is the floor time approach which I need to look into more and diet/ biomedical treatments, and as I said we have already started the gfcf diet with some results, but it would be nice to have some professional help with the diet, we would have to travel out of state to see a DAN! Doctor which we cannot afford right now, but we need a diagnosis first anyway.

Stacey - posted on 10/16/2009

Thanks Erin, it is rubbish that you cant get an assessment, they can always re-assess kids down the track to make sure they are not labelled with something incorrectly, but I know how important it is to intervene early with these things. Im not satisfied that there is enough being done with my son, and that is why I have taken it upon myself to research and keep researching, and implementing a gluten-free/ casein-free diet myself, oh thats another thing, it has taken me over a month to get an appointment with a dietician for my daughter after finding out she is lactose intolerant, and my son is on the waiting list, they cant even give me an appointment time. But you feel like you have to take it upon yourself to try to help your special needs child because there just isn't enough help from the medical profession.

K. Erin - posted on 10/16/2009

they are hesitating to label him because of his age or any doubts that they may have that your son is afflicted with this. My son is 8, in special education programs at school and they refuse to assess him for asperger's because they say he 'doesnt fit the criteria' I will be going to a specialist when I can afford it but until then I have to rely on these ppl and the things they are doing to help my son. They told me that they (meaning special education specialists and other specialists) will not diagnose a child under 5 with any disorder, including add or even dyslexia. It's probably just where I live tho, since I know several ppl with children at the age of 3 recently diagnosed with autism. But my advice to you is keep on calling, it isn't their child so they will dawdle. Call them til they will not answer your calls, for the sake of your child and you call them everyday, every 20 minutes and then when you finally get the answer you need, let them know exactly how long you had to wait, exactly how many ppl you had to speak with on a daily basis and then let them know that they need to find a better way of dealing with ppl with special needs kids. Ask for a supervisor, they are there to vent at. Let them know just what you go through on a daily basis without this diagnoses. Then tell em to shove it...might be wrong but I would do it if it meant my child wasnt getting the attention he needed for so long. good luck! hope all is well and hang in there!

Nicki - posted on 10/16/2009

It took me 8 months to get my son evaluated. It can be frustrating. You can ask the school to do an assessment in the mean time and I recommend looking for a Developmental Pediatrician or someone specializing in Spectrum Disorders. Keep your chin up, it will happen. And if the doctors won't do it, do it yourself. If you can. Call an audiologist or if you have a local Communication Disorders Clinic call and make an appt with them. Tell them you will get a script and a referral and then call the doctor and tell them to fax it over. Its good that he's all set up with school, but it is also nice to have an answer. The best thing is to keep on them about it and be nice, but stern. Are there any Family groups near you? ASA or FEAT? FEAT is families for effective autism treatment. That's the group I belong to. They've helped me alot. Good luck!!