“My husband and I suspect our 7-year-old boy has Asperger’s, but admittedly, we have procrastinated having him diagnosed for fear of labeling him with something that will follow him the rest of his life. Should we pursue a formal diagnosis simply based on our suspicions? And how do children get diagnosed with Asperger’s?”
It’s better to know than not to know. If your child has Aspergers and nobody knows it, the disorder affects him anyway. If parents and teachers do know, they can help minimize the negative impact and leverage the positive. Without the knowledge that you have Aspergers, you tend to come to some negative, misguided conclusions (e.g., “I’m a failure” or “I’m strange” or “I’m a disappointment” etc.).
Aspergers and High-Functioning Autism diagnosis is often a two-stage process:
1. The first stage involves general developmental screening during well-child checkups with a doctor or an early childhood healthcare provider. Kids who show some developmental problems are referred for additional evaluation.
2. The second stage involves a thorough evaluation by a team of doctors and other health professionals with a wide range of expertise. At this stage, a youngster may be diagnosed as having Aspergers or another developmental disorder. Kids with Aspergers can usually be reliably diagnosed by age 2, though research suggests that some screening tests can be helpful at 18 months or even younger.
Many moms and dads minimize the signs of Aspergers at first, believing that their son or daughter will "catch up" with his/her peers. While parents may be concerned about labeling their youngster with Aspergers, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe disabilities associated with Aspergers. Early intervention may also improve the youngster's IQ, language, and everyday functional skills (also called adaptive behavior).
A well-child checkup should include a developmental screening test, with specific “Autism Spectrum Disorder (ASD) screening” at 18 and 24 months. Screening for Aspergers is not the same as diagnosing Aspergers. Screening instruments are used as a first step to tell the doctor whether a youngster needs more testing. If your youngster's doctor does not routinely screen for ASDs, ask that it be done.
For moms and dads, your own experiences and concerns about your youngster's development will be very important in the screening process. Keep your own notes about your youngster's development and look through family videos, photos, and baby albums to help you remember when you first noticed each behavior and when your youngster reached certain developmental milestones.
Sometimes the doctor will ask the mother or father some questions about the youngster's symptoms to screen for Aspergers. Other screening instruments combine information from caregivers with the doctor's own observations of the youngster. Examples of screening instruments for toddlers and preschoolers include:
- Social Communication Questionnaire (SCQ)
- Screening Tool for Autism in Two-Year-Olds (STAT)
- Modified Checklist for Autism in Toddlers (M-CHAT)
- Communication and Symbolic Behavior Scales (CSBS)
- Checklist of Autism in Toddlers (CHAT)
To screen for Aspergers in older kids, the doctor may rely on different screening instruments, such as:
- Autism Spectrum Screening Questionnaire (ASSQ)
- Australian Scale for Asperger's Syndrome (ASAS)
- Childhood Asperger Syndrome Test (CAST)
The second stage of diagnosis must be thorough in order to find whether other conditions may be causing your youngster's symptoms. A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing Aspergers may do this evaluation. The evaluation may assess the youngster's cognitive level (i.e., thinking skills), language level, and adaptive behavior (i.e., age-appropriate skills needed to complete daily activities independently, for example eating, dressing, and toileting).
Because Aspergers is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include brain imaging and gene tests, along with in-depth memory, problem-solving, and language testing. Kids with any delayed development should also get a hearing test and be screened for lead poisoning as part of the comprehensive evaluation.
Although kids can lose their hearing along with developing Aspergers, common Aspergers symptoms (e.g., not turning to face a person calling their name) can also make it seem that kids cannot hear when in fact they can. If a youngster is not responding to speech, especially to his or her name, it's important for the doctor to test whether a youngster has hearing loss.
The evaluation process is a good time for moms and dads to ask questions and get advice from the whole evaluation team. The outcome of the evaluation will help plan for treatment and interventions to help your youngster. Be sure to ask who you can contact with follow-up questions.
More resources for parents of children and teens with Asperger's and High-Functioning Autism:
COMMENTS
• Anonymous said… Different diagnosis but I always had BPD and ADHD since a child and found it very hard in school and growing up because my parents refused me to be diagnosed and didn't agree with medication, which meant I always got in trouble at school and never got the support I needed, I was just seen as a problem child. I think life would have been a lot easier for me if I just got the support and diagnosis when I was a child. I always knew I was different from the other children and didn't know who I was which lead to depression, once I was diagnosed I felt a relief and got the support I needed. To this day I still don't forgive my parents for their decision.
• Anonymous said… My son was first diagnosed with SPD and was seeing an occupational therapist. I asked her one day about having him tested for aspergers( as his teachers were concerned it was more than SPD...he had ALOT of problems at school..especially with authority, changes in routine, even hitting teachers when upset).. Her response to me was" why do you want him to have a label?" MY response was " he already has a label..he's the bad kid that no teacher wants in his/ her class" I'll NEVER forget that and AM so glad he was diagnosed so that he has advocates and teachers can learn more about autism and aspergers and help these kids become better students! All of the help he's received has made a tremendous difference in his behaviors!
• Anonymous said… Diagnosis = Support. Teachers: if they are aware and have information of your child's needs they can take a different approach if necessary. Community: a little bit of awareness and acceptance go a long way in helping your child feel part of their community. People that work in our local shop are aware of our child's diagnosis and are wonderful in supporting him and me by helping him to to shop and keep their eye out if he wonders off etc. Government funding for therapy: therapy is necessary and expensive! You owe it to your child to have an assessment. He deserves the chance to be the best he can be and you need and deserve the support to help him do that. It hurts to be told there is something wrong with your child that you love so much and it will be a process to accept it, but a year down the track when you see how far he's grown and improved you will know you've made the right decision. And they might just say " No, we don't believe he's on the spectrum. ". You need to know! Good luck. And remember there is lots of support here for you and your family x
• Anonymous said… Get the diagnoses.
• Anonymous said… He is who he is a label doesn't change him it just makes its a lot easier with everything to help him helps you
• Anonymous said… I agree. When you have a diagnoses the Government pays the school your child attends for extra help in the classroom. You don't have to tell anyone else about your son's "label" if you wish not to. Depending where you live (I'm in Australia) may depend on how the process begins. With us my doctor started the process writing a referral to a Paediatrician. After assessing, he said aspergers & referred us onto a psychologist. After assessing, he said aspergers. Then back to Paediatrician again for all outcomes. We then got documentation & this helped with the cost for therapist. Good luck.
• Anonymous said… I am raising a 10 year grandson. He started reading at 4,he always did not like socializing with others and never liked loud noises. He was held back in second grade his teacher labeled him lazy and told me to get him to bed earlier.We changed schools and they said the same. I it turns out he has hashitothyroiditis and low vitamine d so with synthyroid and vitamine d every day.The his adnoids and tonsils were removed
• Anonymous said… I don't understand your concern about a "label"? Don't you want the best for your child? If so, wouldn't you want to understand how his mind and body function so that you and all around him can support him appropriately? If he is struggling at school, then your school (if public) should have the resources to start the evaluation process. Talk to his teacher or the school's social worker as a starting point. You can also pursue a diagnosis privately, look for neurobehavior therapists in your area.
• Anonymous said… I hate it when people say label.. Its not a label, its an insight how to treat/help someone who has different ways/needs/understandings to others...
• Anonymous said… I haven't labelled my child......I have helped him understand why he is struggling. I have given him a ticket to the best life he can achieve.
• Anonymous said… I suffered mental illness from the age of twelve. I wasn't diagnosed and "labeled" with bipolar disorder until my mid twenties. After that, my doctors knew how to treat me and my quality of life improved significantly. When my son showed signs of a problem, I didn't wait. I was eager to know the problem so I could help him find solutions. I think we would all benefit if people would be more open and less judgemental. My two cents.
• Anonymous said… I too was scared at having my little guy labelled (being in a private school, what would they say!?!).....it was the best thing I could have done! His school has been fantastic and the support/help is incredible!
Originally the mums thought he was just a naughty child, now they understand and accept him!.....People in general need to be more accepting of our special, gifted children. They are not naughty, should not be subjected to different behaviour, but given the correct respect/understanding that they deserve/need! It's a long process being diagnosed but it's well worth it and you are doing the best for your child!
Good luck hon X
• Anonymous said… I was skeptical to have my son diagnosed as well. Not because of the label, I just felt we didn't need it-I had the mindset of: this is the way he is, and we love him knowing all of his quirks, and anyone who doesn't understand doesn't have to. BUT we have recently gone through the process, and the amount of resources that are available to help him is incredible! From help and understanding with the school, to learning knew tricks on parenting, to social skills classes-it's made a big difference. We've also seen a lot more acceptance from people (which in a way makes me upset, because some of these people should have been accepting before-but it's better for him now, and ill deal with my issue separately), we feel more comfortable with how we parent, and advocating is easier because now we have a whole team to help us through everything. I can very honestly say that I wish we had done it sooner.
• Anonymous said… I'm glad my son has his label. It means he gets the help and assistance he needs and people understand better.
• Anonymous said… It is a double edge sword. We are in the process. My son is 6. Two independent child psychologists have said ASD but now the school's educational psychologist is trying to label him as severe ODD. I haven't found this process helpful at all.
• Anonymous said… It will be easier to know now, so you can learn how to better help him then fight until he is a teenager.
• Anonymous said… 'Labels' open doors! The longer you leave 'starting the process' towards a diagnosis, the longer you put off vital early intervention. It's NOT for you, but your child! Parents don't realize just how lengthy the process is.
• Anonymous said… My son is 6 and was just diagnosed. We had to have a psychologist and pedestrian sign off on it. They worked together with his school for 6 months to see whether it would effect his day today life to much. If it wasn't going to they weren't good to label him.
• Anonymous said… Nobody what's to label their child. I was one of those parents who was afraid to get the "label" as we call it. But getting over that fear and understanding what the positive are. You move on from it. My son needed a "label" because it open so many doors for him. My health insurance covered more and there were services, I never knew was out there. Taking that step is a parents fear not the child's fear. Do what going to help you son not hurt him.
• Anonymous said… Outside of the teachers and staff who you tell is up to you.
• Anonymous said… sleep apnea showed he only sleep 3 hours a night.Got to say he is doing better,grades are three A and 3 b, but I ask the teacher about Asperger if see thought he had it. She has taught kids 16 years and has a son with asperger, her answer was yes.She advised me not to have him tested he will be labeled.This eats at me because for years this child has been misunderstood and as parents and myself I am his mom and granny I feel if I do not ask a doctor I will be letting him down. He needs to understand it as much as I do.So I will have him tested.I only hope you will also.
• Anonymous said… This is how I see a Dx. My son's Dx is that he is Jaxon, but a Jaxon with quirks and challenges I need to understand. I didn't want to push or discipline him for things he wasn't capable of doing. The Dx isn't your child just a better begining to work with them. Best of luck
• Anonymous said… Unfortunately to get help in uk education system having a "label" is the way forward. Don't be afraid of it... If it helps then it can only be good. "Labels " are easily got rid of as child gets older.
• Anonymous said… We all have challenges! If your child has autism chances are the children around him already have some idea that something is off. The social help for kids with ASD is crucial.
• Anonymous said… Yes you should because if you don't there is not a school or a medical system out there that will help your child with out that label for extra support, unless your willing to pay $$$ a week going private.
• Anonymous said… Yes, most definitely yes get a diagnosis. It can be tough to accept; but the best thing to do is that if your child is determined to fall within the ASD; don't allow your child to use it as an excuse. Your child is not Autism; your child is Billy, or Sally or whomever they may be. She/she may have some limitations; but their abilities are incredible. It's okay to say "Billy, you do have Aspergers syndrome; and some things may be harder for you to understand; but you're smart and able and we'll figure it out together"; or something along those lines to encourage your child they are not broken. Some things may be harder to grasp; but it can be done and it will be done with proper therapies.
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