From First Concern to Diagnosis - What are the barriers?

Parents taking part in IAN Research have told us a great deal about their first worries for their children, as well as how long it took to get their child an autism spectrum diagnosis. In our February '10 IAN Research Report, we share their comments on this topic. What was this journey like for you or someone you know? Why do you think it takes so long for worried parents to get a diagnosis for their children, especially considering how crucial early intervention is?

If you haven't read the report, you can read it here: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_13

We noticed sensory and muscle tone problems with our 2nd son (now 18yio) almost from the time of his birth, and by the time he was 2yo it was obvious that something wasn't the same as other kids his age. I made more than one trip to the pediatrician to express my concern. One had our son stand on one foot with his eyes closed and pronounced him just fine. Another related that he himself had started a fire at a local airport when he was five and look at him now--he was a pediatrician. I think our son's very advanced intellectual skills made it very difficult for strangers to believe that there was anything wrong with him. In fact, his difficulties were first diagnosed to be the result of being highly gifted ("they're often "weird" and have trouble relating to other people"), with a bit of ADD in the mix. He didn't get a correct diagnosis until we finally got him in for a thorough evaluation at a clinic that specializes in pediatric neurological issues. Then the school , having no experience with AS, insisted that our son's issues were emotional. Argh! It was uphill all the way despite the fact that he's quite severely affected. It was as if there couldn't be anything wrong with a child with normal verbal skills.

Not only did our son not benefit from early intervention (is that available even today for very young kids with AS?), but he was blamed for his difficult behavior, and we were repeatedly told that there wasn't a medical problem ,which implied that we just weren't parenting him properly.

I would hope that parents today aren't running into the same road blocks. I think that pediatricians at least are better able to recognize classical autism. I'm not so sure that much progress has been made in correctly diagnosing high-functioning autism in similarly young children though. I always wonder if intensive intervention in the preschool years might not produce the same degree of progress that it can in some children with classical autism.

Sue

Hi Sue.

I just wanted to note how striking the lag time is between first worry and diagnosis for children with Asperger's syndrome (AS). According to our data, parents of children with AS are worried, on average, before the child is even 3 years old, but are unable to get a diagnosis for their child for nearly 5 years. These children are 7.2 years old, on average, before they receive a diagnosis and the possibility of any help.

I, too, wonder if there has been any significant improvement in the response of professionals faced with a very young, verbal child with AS since your family went through this. Are pediatricians stopping and listening, or are they still dismissing parents' fears, especially when a child does not suffer from mental retardation and is verbally precocious?

Our Doctor sent us the state for diagnosis. They sent us to the university.

They ran our daughter through 5 or 6 different disciplines I.E. psychology, Med, Edu, ect... Spent a entire day (in public with a Autistic kid) there plus travel, lodging, away from work, taking care of our other kid. Our daughter melted down the ENTIRE night at the hotel. To tell us something we already knew.

When it was final they told us more of what we already knew. The only "Value Added" part was having the diagnosis in hand.

They absolutely did not have anything to add to what we knew. And in fact due to our research we were more current than they were. "Oh we have not heard of that." Give me something for my money.

We are not just a footnote for your next book.

As you can tell I'm a little bitter about the whole process

bssage, I'm so sorry to hear what a nightmarish experience the whole diagnostic process was for you.

You describe so well how difficult it can be just to bring your child to an evaluation.

I hope stories like this help evaluators recognize how much families need to feel they have received some new insight from the process. What can they provide, in terms of support, resources, insight? Often, the diagnosis alone is no news to a family that's been pretty sure of it for some time.

Of course, as you say, the holy grail of the entire process is mostly that piece of paper that opens the door to services - the "official" diagnosis.

Stephen, soon to be 13 years old, was a victim of the barriers of getting a diagnosis. He suffered through being diagnosed with ODD, prior to getting a diagnosis of Asberger's. We noticed differences prior to the age of 2 and he did not receive his diagnosis until about 2 years ago. The saddest thing about this is that he is soooo intelligent when it comes to certain things, but has had a very hard time getting past his developed dislike of school related to those first few years. He just started middle school, and thanks to a very perceptive teacher who works with Stephen (and "gets it" - as Stephen says)he is doing much better.
Quentin, who will be 3 in Sept, is already getting early intervention services, but even this took awhile. I was letting the pediatrician know very early that we were seeing signs of Asberger's, but he did not receive an initial evaluation until about 6 months ago. Until the Dr completed the ASD scale for Quentin, he did not understand what we had been trying to tell him.

Hi Bobbi, and welcome to IAN.

I'm so sorry to hear about how long it took to get your first son with Asperger's a diagnosis. As you can see from the discussion here, that is not uncommon.

I am so glad to hear that you have been able to get much earlier help for your second son, but it is discouraging to hear how parents are still having to convince medical professionals that there is an issue. At last year's Autism Society of America conference near Chicago, a speaker was talking about how pediatricians are getting better at recognizing early signs, and there was actually some boo-ing in the audience. There were many angry parents whose pediatrician had not listened when they brought up concerns.

It is very likely that a child who can speak well, as children with Asperger's can, does not fit many doctors' mental image of "autism." I hope that the new initiatives by the American Academy of Pediatrics, which stress that a pediatrician should not dismiss a parent's fears, but take a closer look, will help remedy this situation. As for parents, they may want to remember to say, "It's a social disability; this is not something we can illustrate for you in the doctor's office, so listen to what we have observed in the classroom, on the playground..."

As for people who "get it," that seems to be the key to so much for children on the spectrum. If they are accepted and dealt with with just a little sensitivity to their needs, everything seems to be better.

Our son, now 8yr old didn't really have that much of an issue receiving an initial diagnosis, however it wasn't for autism, but sensory integration disorder and developmental delays. My wife and I felt he would have problems starting pre-school (at 3 yr old) because of his sometimes lack of communication skills. His pre-school (a Lutheran church pre-shcool) teacher at the time had a background in special education and felt there was something wrong with Dalton. She gave us a list of things she saw and upon researching them ourselves everything came back to ASD. Our pediatrician put us in contact with a developmental pediatrician the next city over from us. Other than the 3 month wait to get an appointment he was pretty good, however he came right out and stated because the autism spectrum is so wide he doesn't like to diagnose ASD but rather give specific diagnosis like sensory integration disorder and developmental delays.

We got our son into OT and Speech at the suggestions of the developmental ped, which at the time was what we could afford and our insurance picked up some of the cost.

Once he started school, he is in a regular classroom as our county is full integration for special needs students, his IEP just showed developmental delays. The administration at the school told us that he would get better services from the school if he had a diagnosis of autism. In Richmond, VA (about 60 miles from our home in Williamsburg, VA) at Virginia Commonwealth University, they have a Autism program and will do a multi-disciplinary evaluation. We brought our son to that when he was 5 yrs old and after a 4 hour evaluation (only cost $250 - insurance didn't pay) they gave him the official diagnosis of Autism.

We had some concerns when he was 2.5-3 yrs old, but he was our first child and at the time we didn't have any friends/relatives that had children that we could compare his development to. He was quiet, but we felt he communicated well enough with us. He didn't get sick much so our visits to our ped were just once a year so there was limited opportunity for her to see his behaviors. He would do things like sit on the kitchen floor and spin lids from Tupperware containers, we were actually more impressed he could do that with ease (now realize that was a HUGH sign of a problem). Once we expressed our concern to someone that had some knowledge (preschool teacher) the diagnosis from there was fairly quick. The only reason we got hte official diagnosis was to get his IEP to reflect Autism, which has gotten him many more services at school, in fact his elementary school is now a model in the county for the programs they have started, mainly to support our son as he, in 2nd grade, is currently the elementary (K-5) school's most "experienced" autism student.

Thanks for sharing this, Billsburg. I think many families do find that a formal autism diagnosis opens the door to more services. Still, it is not uncommon for other, more general labels like "developmental delay" to be given when children are very young. These can be enough to get some intervention started while parents seek a more definite diagnosis. Of course, as a child grows, the clinical picture can become more clear, as well.

As a parent going through the process of having a child diagnosed right now. I feel that majority of doctors do not listen or are not educated enough in asds. I had expressed my concerns for my daughter 3 months into her life. AJ was breast fed, but the one day while I was at work her father had given her a bottle with formula. AJ had thrown up for 3 days. The doctor then thought no big deal just an allergy to dairy. I had also expressed that AJ crossed her legs and curled up into a ball over and over like she was doing crunches (she occasionally still does this), Then again I had been told nothing was wrong. During the first two years of AJ's life she had missed every developmental milestone. And was told by her doctor some kids take longer to do things. Now at the 3 yr old doc appt, the doctor finally notices a speech delay (she babbles and repeats what you say over and over). I had told her about this at our 2 yr old appt. And about her food rejection (aj will only eat chicken and this has been like this for 1 and a half) and as some research has shown some autistic children do have food issues. Her father did not allow me to really express what was going on in this appt. But I brought up the factor of autism and it was very quickly dismissed "your child is not autistic, she shows no signs" At this point I am ready to get a new doctor. I am a psychology major, A lot of signs of autism are very stark with AJ. Her speech, food rejection, the temper tantrums 3-5 min. have been up 8 on some days which can last anywhere from 15 mins to an hr. If she does not want affection there have been times when I gave her a kiss on the cheek and she has violently hit herself and her cheek is bright red proceeded by a temper tantrum. She is very clumsy, falls all the time. or bumps into things. Her gross motor skills are off, she runs funny and does not know how to jump the doctor had seen that in her office. Her comprehension of what you want her to do (simple things like pick up your shoes) is off the doctor also observed this. The refusal to make eye contact. and so many more. Finally I did my own research, checked off many lists before calling the doctor and demanding an evaluation. I wish the doctor would have listened to me a year and a half ago. Now my new barrier is that the place that she is sending me for the psychology evaluation the first opening is nov. 16. so It will be 3 more months before I get a diagnosis that will probably confirm my suspicions. I have no other choice because the speech eval and hearing eval is done out of the same hospital. This is just a long stressful difficult process. And all I want to do is help AJ succeed and let us overcome the hurdle so that she can function better.

Hi <3ajl, and welcome to IAN.

I am so sorry that you have experienced so many worries for your daughter, and that you have felt dismissed by your pediatrician. As you can see from the discussion above, many parents have had this experience. I know how frustrating this is when you are worried and want answers, and that a long wait when you finally do get the go-ahead for an evaluation is very difficult to bear, as well.

You have absolutely done the right thing in getting that evaluation done. The sooner you get a firm diagnosis, whatever it may turn out to be, the sooner you can access intervention. I also find that for most parents a firm diagnosis is easier to take than the worry and limbo that came before.

Good luck with the process. If your daughter does receive an ASD diagnosis, I hope you will use the resources here on IAN Community to help you as you begin to walk this new path.

One article that may be helpful right now is this one on what to expect at an autism evaluation: http://www.iancommunity.org/cs/articles/frequently_asked_questions_about_autism_spectrum_diagnoses

We also have an entire section for those who have just received a diagnosis, here: http://www.iancommunity.org/cs/newly_diagnosed/

Best wishes to you.

My son Brayden is five years old. I had noticed since very early on he was different. Very bright and ahead for his age in speech and learns quickly but he would get upset and bite himself head bang me. He hates being alone.Potty training was horrible. I suspected AD/HD because it runs in the family and I have it but never suspected it was more because he is so smart. He loves animals and bugs. He hunts grasshoppers and plays with them for hours.He has social issues and says inappropriate things.Takes off his clothes. Urinates where he feels like it usually in drawers buckets.It has been a long road but I finally got a DR. to listen to me and he diagnosed him with AD/HD. He put him on Concerta.It helps a little but when it wears off he has melt downs and tantrums.He often wakes up crying telling me he is just sad. Won't sleep without me and I have to turn off all lights and he will keep talking and asking me questions about bugs or snakes or monkeys.Very draining when I have to get up for work. He has always had sleep problems.The DR. referred me to a Psychologist who I am afraid does not have much experience with this.He thinks he has Aspergers but wants to evaluate him more.The appts. are far apart and it seems like forever to just get one little step closer.Since he was around 3 and got his immunizations he started getting much worse and he started getting high fevers, diarrhea, vomiting for days at a time. He now just gets high fevers up to 105 degrees for days. One episode lasted 11 days.Is this common in children with these disorders?

Hi braysmom, and welcome to IAN.

I am so sorry to hear what a difficult time you and your son are having. It sounds like he needs a very thorough evaluation, both by someone expert in autism spectrum disorders and child development in general and by a physician. Although sometimes gastrointestinal problems do accompany ASDs, the types of fevers you describe do not. If there is some kind of illness at work, it would certainly make any kind of ASD or ADHD issues worse because when a child with these other issues does not feel well they are even less able to self-regulate, rest, or benefit from therapies they are receiving.

To find someone in your area expert in evaluating whether a child has high functioning ASD or Asperger's, you might ask your pediatrician. You might also contact the Autism Speaks' Autism Response Team: 888-288-4762. Another possibility is contacting your local chapter of the Autism Society of America and asking about who is known locally for evaluating ASD in young children who are verbal and might have Asperger's: http://www.autism-society.org/site/PageServer?pagename=community_chapters

At the same time, consult with your pediatrician about the fevers and other physical symptoms your son is experiencing. He should be evaluated for this apart from any potential ASD or ADHD.

As with all medical issues - if your physician dismisses your concerns or you don't feel comfortable with the response you are getting, it is certainly fine to seek another opinion.

I hope you are able to get helpful answers soon, and that this situation improves.

Hey all! Its been a while since Ive been onhere. My 8 year old son was referred to Kennedy Krieger back at the end of Sept after he had several incidents in school and on the bus which led to a 2 day suspension from the bus and a 1 day suspension from school. In one he grabbed a pencil from the teacher's desk and ran in a stabbing-like motion towards the teach, which led him to be taken to the local hospital. They referred him to Kennedy Krieger and since then we've been going once a week and he still displays behavior problems. KKI is referring him to the NBE-NeuroBehavioral Unit which is going to be at least a month long process before he gets in. He was taking 40mg of focalin at one time and his new peditrican changed it to Addrall and his night med is now Risperidone. Despite his medication keepinghim some what calm, he still goes off the deep end. I am hoping he can get a proper diagnosis and medication to help control.

Hi MB1977, and welcome back to the IAN forum.

I'm so sorry to hear of all the behavioral difficulties. These are so common in children with ASDs, and no fun at all for families trying to cope. It sounds like you are in line to get some help focused specifically on these issues, although I know it's hard to wait.

I hope very much that the situation improves very much once you receive the additional intervention. My best wishes to you and your entire family as you work through all this.