Getting an Aspergers Diagnosis - The Pro’s and Cons.
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This week’s post tackles the following question:
Question
I would really like to know the pros and cons of getting a diagnosis. My 6 year old has been evaluated by a therapist who suggested Asperger’s, but I have heard good and bad about having a formal diagnosis and would like your opinion.
Answer
The importance of having your child evaluated and obtaining a formal diagnosis cannot be stressed enough. A diagnosis of Asperger’s can be very tricky because, for most children, symptoms vary and change over time. Symptoms of various conditions do overlap and patients may have several conditions at the same time.
Regardless of the outcome of an evaluation, having a diagnosis of any illness provides a beginning for parents. If there is an illness or disorder diagnosed, the parent can then obtain a ‘road map’ for coping with or healing the child.
Not only is it important to obtain an early, specific diagnosis from a doctor or therapist, it is also important to obtain a second opinion. Many childhood behaviours mimic one another, and a second opinion is invaluable when assessing a child’s behaviour. Since Asperger’s Syndrome varies greatly from one person to the next, with some having many, serious problems and others having only minor problems, obtaining a second opinion can confirm a diagnosis of Asperger’s Syndrome.
Also, it is important to obtain an early diagnosis because early intervention and treatment often lead to greater success. And also, age-appropriate learning proceeds without any unnecessary delay.
Many children with Asperger’s are very intelligent and clever. They are able to cover up difficulties and may not be diagnosed until they are adults. Many adults with Asperger’s Syndrome are very high-functioning people who learn various coping mechanisms on their own. The most widely recognized diagnostic tool for Asperger’s Syndrome is the Diagnostic and Statistical Manual of Mental Disorders. Known as the DSM, it has the full diagnostic criteria for pervasive developmental disorders such autism and Attention-Deficit Hyperactivity Disorder (ADHD). A good explanation of the criteria for autism and ADHD can be found at www.childbrain.com website.
As defined in DSM-IV, the most recent revision of the DSM, the criteria for Asperger’s Syndrome (AS) follow the same format as for autism. The symptoms are organized by onset, social and emotional, and “restricted interests” criteria, as well as motor deficits and isolated special skills. A final criterion for Asperger’s is the exclusion of other conditions, such as autism itself and Pervasive Developmental Disorder. The child might exhibit behavioural delays or deviant behavioural patterns in multiple areas of functioning.
If diagnosed, it will be helpful to explore resources for your son, such as an Asperger’s specialist who can teach him social skills and help him understand his diagnosis. Assuming that your child is currently in school, the first place to look for help is at school. School counsellors have been trained in teaching learning skills as well as basic techniques of psychology. They maintain a working knowledge of DSM diagnostic criteria, and many of them work closely with doctors and psychiatrists when they are formulating a child’s diagnosis.
Many countries mandate evaluations of all students who may have a disability – of any kind. The evaluation leads to a plan for remediation and assistance. If your child is out of school, find a licensed psychologist (one who has a Ph.D. from an accredited university) to help him and refer him to the resources that are available for people with Asperger’s Syndrome.
All the Best
Dave Angel
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I’ve been so thrilled with my son’s diagnosis. It’s an invaluable tool when dealing with my son’s schooling. With the diagnosis, I no longer have to fight for services for my son. The diagnosis spells out what the schools need to provide for him. I’d recommend getting a diagnosis for your son.
Comment by Elaine Powell — June 10, 2008 @ 2:19 pm
Sometimes I regret that my daughter has a huge file that follows her from scool to school because of the diagnosis. In some ways it might have been better not to share the diagnosis and just say she is a “quirky kid with anger management issues”. One teacher assumed my child had no interest or ability to form relationships with other children - which eventually sent the child into a complete emotional shut-down. It took 8 months away from school with intensive sensory therapy to bring her out of the shut down. Now that we have decided to never risk sending her to public school again, I can determine what information to give to the school (instead of the huge file that the public school maintains). I do tell them she is Asperger’s - and then provide reports and information that outline how the Asperger’s uniquely affects her individually.
Comment by Susan Lindsey — June 10, 2008 @ 2:31 pm
I’d recommend that you get him tested, but even more importantly, you do your research and homework. Don’t wait for the school system to give him what he/she needs. You know your child better than anyone. You need to be the driver in your child’s education. By the way, this is not about ‘healing’ or fixing the kid. They’re not broken. It’s just about finding ways to work with his/her differences so that they can grow and flourish.
Comment by Carren Abrams — June 10, 2008 @ 2:34 pm
I haven’t seen that my son’s diagnosis has done any good for him. We still have to fight for services at school and still have to contend with state agencies because they don’t recogize the Asperger diagnosis (it has to be Autism). So, there’s the con side of this coin!
Comment by Lela — June 10, 2008 @ 2:37 pm
my son was not diagnosed until he was 15 years old. the diagnosis was such a great relief for not only us as his parents but for him as well. you are so lucky to have caught this at an early age. our greatest help was getting him in with a one on one counselor who would actually take him to the mall or the local coffee shop and they would sit and profile people. it is very important to take them out in the environment that they struggle with instead of sitting in a 4 walled room.(been there done that and it’s a waste of money and also causes undue stress on the child.) My son also just started neuro-feedback. he has only had 2 session of what will be 30 and we are already seeing a difference in him. i really think that you are lucky to have had the opportunity for a diagnosis at an early age. i hope that you can get the help and resources that he need. good luck and God Bless You!!!
Comment by lori — June 10, 2008 @ 2:38 pm
My sons first diagnosis was incorrect. By getting a second opinion and diagnosing possible Asperger’s, it has made life easier. My son is only 4 and a half and is not extreme. Now we can improve behaviour while he is so young. I strongly recommend the GF diet - doctors don’t necessarily believe it works, but we have had tremendous results in just 2 months.
Comment by Wendy Graham — June 10, 2008 @ 2:41 pm
I also dreaded my sons diagnosis. I creid for 2 days after It as determined, but I would not change it for the world. From that 1st summer to 6 years later he has grown & changed so much. without the diagnosis he would not have had a case manager that meet with him once a week, with out that diagnosis he would not have had the summer program that he attended & all the countless other things that he attended & did. with out it all he would not be the little man he is today & he is almost 13 years old. & people tell me today that if they did not study him to find his problem they would think that he was just a ver intelligent young man, not a diagnosis. Please do not fear the unknown. For what God has brought you up to. He will take you through it.
Comment by Tina Barragan — June 10, 2008 @ 3:18 pm
My 7 year old son was diagnosed 2 years ago. In one sense I wish it never happened. I fear I am his biggest hurdle since his diagnosis. The school system being his second, they have him completely isolated from all of his peers and he seems to be suffering more with it than before.
Comment by Valerie-belle Ramchuk — June 10, 2008 @ 3:23 pm
My son’s school have no clue what to do with an aspergers child, and as a result, he is going on to secondry well behind, like lela it has been a fight, one which I feel I have lost, I feel in his case the system has let him down, through lack of knowledge regarding this condition.
Comment by Lynne — June 10, 2008 @ 3:45 pm
I have been very thankful for a diagnosis (Asperger’s) because I have a name for what I’ve been trying to explain to doctors for years. It has also been good to have something to research for ways to help my son and better understand what it’s like from his perspective. Sadly, I’m afraid I know more from my own research on AS this past month than the special educational experts at schools in our area.
Comment by Ronda Whitford — June 10, 2008 @ 4:14 pm
We have known since 1st grade that something was different but as time went on it became clear in 5th grade that interventions in the home and independant research was not working and we needed help, and fast. We were afraid to label our child because it would mark her as a problem child. Now that we have obtained a label, we gained specific AS resources and have learned that we are not going through this alone. The school system is trying to help but we still have far to go. As parents, we have to keep our chins up and ride the rollercoaster through school, home and medical issues as they arise. The biggest problem we have faced is “red tape” of the services she needs. Redundant paperwork, waiting lists and uneducated staff keep me on my toes. After her diagnosis, the Center for Autism and Related Disabilities was able to guide me through the IEP process, give me additional pointers for hope, and help me meet other parents who are going through the same issues.
Comment by Jadzia — June 10, 2008 @ 4:17 pm
My son was misdiagnosed as a five year old and given the label of pdd. With a low IQ!!!! I knew that was wrong and found a psycologist specializing in high functioning and Aspergers. He was finally correctly diagnosed with Aspergers as a 7 year old with a high IQ except in the area of social functioning. Trust your instincts and don’t give up!! It never seems easy….there is always the brick wall….just when things are sailing along. He is now a Senior in high school and I still fight for everything in school and the teachers seem to feel as if he is to normal to be Aspergers!! Not true….they all need much more education on the subject of Autism spectrum disorders! Best of luck to everyone. I must say that it is my feeling that to not get a diagnoses for your child would be cheating them out of all they can be and the help they will need for a lifetime!
God Bless….Kim
Comment by kim — June 10, 2008 @ 4:44 pm
Although hearing the words, “Your child has Aspergers” isn’t easy, it will open some doors for your child’s future and allow you to move forward. Early intervention is key. If you have a gut feeling - follow it!!! Even having a gifted child has it’s challenges so look for the positive qualities in your child and focus on his strengths. You are not alone.
Comment by Lori — June 10, 2008 @ 4:45 pm
I find it helpful to know my son has aspergers, but I am not convinced getting the school system invloved is helpful. We have enough trouble with labels and the relationships that matter - peers — don’t care about some diagnosis anyway. I find channelling his “restricted interests,” like love of playing an instrument, can be the best way to deal the hand you are dealt.
Comment by Tony — June 10, 2008 @ 5:48 pm
I had my son age 7 diagnose thinking that would get the help he needed at school. I fight at least once a month with his school. He still does not have the correct help in the classroom. I am hoping next year will be different. Good Luck and God bless
Comment by Pshaffer — June 10, 2008 @ 7:03 pm
My son was diagnosed with aspergers at the age of 6. Unfortunately the first schools took no notice of this, but 4 years later, after taking him out of school twice to home educate him and with the support of his doctor, it is now stated in black and white on the school records that he has aspergers. The middle school he goes to is excellent in meeting his needs, and he is at last happy at school. Never give up the fight. Your child is worth it. It took us 5 years, and everything has improved immensely!
Comment by Ellie — June 10, 2008 @ 7:09 pm
It took 13 years to get a diagnoses for my daughter here in Australia and not from the lack of trying to find out where her problem lay. Unfortunatly she ended up with a “lable” and we found she had Asperger’s but this opened more doors to help her. There is no support for these children where we live as we are not near a major city but at least doctors and councilers and teachers are now aware of her problem and can assisst us in her education and approach to life/friends and maturing to a woman. God help me when I have to teach her to drive next year!!
Comment by Barry — June 10, 2008 @ 7:44 pm
My grandson of 12 1/2 who has been with us for 9 years was diagnosed by a pediatrician with A.S. We are now in a court case as his mum wants him back but he wants to stay in our home and now the court psychologist says he has ADHD and has talked the psychologist into that possibility. He said that my grandson would have a more robust family life living with his mum stepfather and half sisters. He loves the computer and chess and ball games i.e. basketball and softball and table tennis but his fine motor skills aren’t good. He is good at maths and poetry and thinks he is excellent at spelling. He does not eat much protein as he wont eat meat so he has a problem with weight although that might leave the pediatrician thinks when he is 14 years and strts to grow. His school doesn’t think he has A.S. but they have Education Special services in on it and they suspect A.S. but say they will put things in place at the school for his behaviour and socialising. Personally I dont think there is a problem. He is an oddball but I love him.
Comment by Lillian Carde — June 10, 2008 @ 8:07 pm
That is what people say to me is that my 8 year old son you can tell he has adhd but they will never know he had aspergers. That is because we got him treatment at a young age. That is teh goal to get are children to function as best as possible. People that are uneducated about autism think well I dont see the problem so their isnt a problem. I know because those are the people with the problems.
Comment by shannon — June 10, 2008 @ 9:23 pm
I’m still fighting for a diagnosis of Aspergers Syndrome for my 6 year old daughter. As the mother of a 4 yr old with autism, I know how much the diagnosis can help. Insurance will not pay for any of my 6 yr old’s therapies(she has been diagnosed with somadyspraxia, but it’s a sensory disorder and insurance will not recognize it as a diagnosis by itself) so we are private paying for her hippotherapy and sensory integration therapy. On the other hand, I have heard that Asperger’s Syndrome is one of the diagnoses that is a “double-edged sword”. Not considered a disability by Social Security Disability and if the child has only mild symptoms, will probably be denied for therapies. Yet, it helps the parents begin to understand and help their child through some of the behaviors and perhaps schedule the child to see a behavior specialist who can also help teach social skills. I’m definitely in favor of getting the diagnosis and parents should always remember that whether or not THEY choose to share this diagnosis with anyone(school, doctors, or anyone) it is ENTIRELY up to them to release that information.(This is where HIPPA comes into play) If you don’t agree or don’t think the diagnosis is going to help your child, don’t release it!
Comment by Melanie — June 10, 2008 @ 9:32 pm
My son has just been diagnosed with aspergers. he is 10 years old. when I asked for a diagnisis to be made I was asked why and would a diagnisis make me view my son differently. I was puzzled by these questions because to me a diagnosis was important to access the services, but particularly dental and orthodontal work my son needs. He won’t allow any dental work to be done and we are exploring the pros and cons of a general anasthetic to get the necessary work done. It is early days yet but already we are experiencing the postives of a formal diagnosis.
Comment by Julie Dent — June 10, 2008 @ 9:47 pm
My son was diagnosed at age 7. It has opened doors for us as far as getting help. I must disagree, however, that the school is a good place to start getting help. My son’s school has insisted that his behavior is willful, and he does not belong in a mainstream classroom. Despite the fact that I have submitted written diagnoses from 2 professionals, and had 2 advocates in case conferences with me, they still refuse to acknowledge the fact that my son is diagnosed with autism and deal with the behaviors appropriately. They have discontinued speech, and refuse to provide OT for him. I took them to mediation to get him a portion of the services he needs, and I have provided the rest outside of school. I still have difficulty with the school, and have to fight to ensure that he is treated fairly. All in all, though, I have felt having the diagnosis is vital to his growth and development. Good luck and God bless.
Comment by Kris — June 10, 2008 @ 10:31 pm
I would like to get my son analyzed so he can be diagnosed if needed - I just dont know where to start. Where do I turn? I dont want to go through his school - are there any other ways to find a reliable/trustworthy doc/therapist? I live in upstate NY - does anyone have any good recommendations?
Thank you.
Comment by Mara — June 10, 2008 @ 10:41 pm
In January or 2008 the counseler for our grandson who we are raising called and asked me to look up Asperger on the internet. I did found this website and today with the help of this site was able to get him tested. He does have Asperger. I did not know whether I should be happy or sad. Happy because I can finally get the schools to give him the proper help. And sad I think because we did not know this in kingegarten. He is now going in to 4th grade. I have fought hard for him and last year finally was able to get a teache that knew what Asperger was. Wow what a change. And today he was finally formally diagnosed. Thank you. In Colorado Sewell test and they take Medicaid. Good luck with your son.
Comment by Claudia Worth — June 10, 2008 @ 11:59 pm
Yes agree pros & cons to being diagnosed, but in the long run if your informed & self educated about the issues the more at home help you are able to give your child. Diagnosis does not stop the fact that you have a child with a disability & that your whole world has been turned upside down, but if you can make a jornal over the years and look back every now & then you will see what a difference it has made. My son is now 6 he was diagnosed at two And a half he has grown and succeded & lost & cried, but is doing fab in main stream school with the help of special Ed Teachers & Aids. We must always remember that we have a little son/Daughter first then the dissability. Remember that And its all good.
Comment by Wendy Oldfield — June 11, 2008 @ 2:35 am
although i agree that a diagnosis is a good thing, it doesnt mean that you are helped a great deal more. my 10 year old grandson was diagnosed with aspergers 5 years ago, adhd 3 years ago and psycology reports this year state ‘wide ranging and complex needs’ he is also dyslexic ( as is his mother)although not formaly diagnosed.he is still unable to read and write, he is at age 5 in a lot of areas and still the education department are unwilling to help.
Comment by julie whitfield — June 11, 2008 @ 5:47 am
My daughter was diagnosed at 6 and I feel at least I know what I’m deealing with. We have started her on socialisation classes with 6 other kids her age and they are now learning the skills that come naturally to us. I hope it helps
Comment by Cindy — June 11, 2008 @ 6:31 am
I am still waiting for my 8 year old son to be diagnosed (a year and a half after first going to the docs!), but in the meantime, I have found it extremely beneficial to inform any adults who have contact with him eg. teachers, swimming instructors, cubs leaders, as they are then aware and don’t just think that he is naughty or being difficult and can help him instead. He is moving to middle school in September and I have already informed the school (because he hasn’t been fully diagnosed - he doesn’t have a statement yet), so they are aware and can prepare and inform all adults that will be in contact with him.
Comment by Netty — June 11, 2008 @ 7:56 am
My eight year old finally got a formal Asperger’s diagnosis- the school says that changes their initial rejection of support services (they said she’s “too smart & too verbal” to need help!)but the special ed people that would have to be involved in her treatment still deny any disability. I see the diagnosis as a tool in my quest for help. Smart kids can have disabilities.
Comment by wendy kennedy — June 11, 2008 @ 9:03 am
At my son’s school, we needed to have him diagnosed in order to get the best services from the Child Study group and in order to get an IEP developed. Originally he was diagnosed as “Emotionally Disturbed” (ED) because he didn’t fit exactly into the Aspergers category. However, over the years the Child Study team suggested getting him re-evaluated as Aspergers for his IEP. Apparently with the ED designation the schools tend to wait till you fall apart and then try to pick up the pieces, but with an Aspergers diagnosis they try to help before the meltdown occurs. We found that the school was much more helpful once we had atleast some formal diagnosis. It also helped to get him out of the category of just a “bad kid” which is how a lot of teachers looked at him before his diagnosis.
Comment by Bev — June 11, 2008 @ 1:50 pm
With a diagnosis and then a battle with local education authorities, my 9 yr old as son, who has now been out of school for 2 years, is being funded at NatureKids, an alternative school in hertfordshire, and his own teacher at home 2 mornings a week. The label is the only way to get educational support for these kids, who are often exceptionally able in many areas. My son is now happy, instead of wishing he were dead as he used to 2 years ago
wwww.emotionalhealing.co.uk
Comment by emotionalhealing dot co dot uk — June 11, 2008 @ 4:26 pm
Finding out about Aspergers is a godsend. I’ve known my child was different since she was very young. I’ve not had her diagnosed formaly because I wanted to raise her with no label. I’ve spoken with her teachers and apparently they did not pick up on her “quirks”. So I let them think she was just as “normal” as others. I’ve just introduced her to thinks like Kumon(an afterschool tutoring) teaching by repeating and she had bloomed after taking acting classes. The acting classes had shown her how others may perceive her and taught her to put on a facade.
I don’t recommend not getting diagnosed, it’s just what had fit our lives. She had found a friend at college, also not diagnosed but she had said her father knows she has Aspergers. They share a secret of Aspergers and had not revealed it to any of their other friends by choice. Each child is different. I just wanted to let you know that even though they have Aspergers, if you love them for who they are, the love comes back.
Comment by Linda Oxiles — June 11, 2008 @ 7:30 pm
Mara, this info is for you. The Kelberman Center in Utica N.Y. was recommeded to me by a friend. The phone is (315)797-6241. They evaluated my 7yr old son, but did not give him an Aspergers diagnosis, but didn’t rule it out either. The school he attends has been very helpful in working with my son and The Center. He now attends a social skills program there. Hope this helps.
Comment by Jeff — June 11, 2008 @ 11:47 pm
When my son was diagnosed with AS the news was recieved with some doubts and fears (for him)
The formalising of the diagnosis was discussed and the implications regarding educational assistance. We went with it he has recieved help with social skills at school and the changes in his behaviour are positive both at school and home.
I say give your kid every chance at proffessional help, and a normal life.
You dont need to go it alone!
Comment by Ian Tucker — June 12, 2008 @ 1:46 am
Once you recieve the diagnosis of Asperger’s so many areas of help become available to you. The school system will have him evalued by their autism team, and a IEP can be put in place. My 10 year old recieves Social Security SSI benefits, that help me to pay for his social group therpy bill, and gas to and from. He is now on the waiting list for the autism waiver offered by the state. I cannot see a single bad thing that has happened because of the diagonis.
Comment by Kimberly — June 12, 2008 @ 1:40 pm
My son was recently diagnosed at age 25. HE lost all those years of early intervention. He was improperly diagnosed as ADD. He had some learning problems but none of the teachers or doctors ever diagnosed him with that until recently. Back in the 80’s they did not know much about As. He fits the AS characteristics to a tee! We all feel cheated and could of been in a better place now if we had known earlier. He is a college graduate and is currenty looking for a job. But the social skills are holding him back from having a good interview. Not too many good doctors with an expertise in AS. Anybody know any good doctors in Baltimore, MD USA?? So I totally agree… GET AN EARLY DIAGNOSIS. I feel sad ,guilty, angry and anxious. He is a sweet and loving boy and now has to face AS and other problems. This diagnosis has helped us to become aware of AS and how prevelent it is. We are reading books, watching movies, and going to many websites about AS and hoping to become experts. But it seems that for adult AS there is not as much groups or help for this? Any comments?
Comment by Zee — June 12, 2008 @ 5:46 pm
My 5 year old son was recently formally diagnosed Aspergers, he was initially identified at 4 but we waited to see what would happen in school. We have had fantastic support in Canberra, the schools, therapists and psychs have all been great. What has been difficult has been discovering that I also have Aspergers because there is no information for women in their 30’s with it. But my son and I have a unique understanding. I don’t know about other places, but for us, the diagnosis has been fantastic. Good luck to you all.
Comment by Mylie — June 12, 2008 @ 6:32 pm
Be careful that schools and services are not denied with an Asperger’s diagnosis. Some people (professionals included) still seem to think that an Aspie is not autism. Our son was denied services at school for 4 years before they finally qualified him for an IEP under autism and speech. At our local regional center, we can’t get any services because his symptoms are “too mild.” I encourage everyone to read the summer edition of the FEAT (Families for Effective Autism Treatment) newsletter which has an article on this very issue.
Comment by Kelly — June 13, 2008 @ 9:38 pm
I guess being in the medical field I don’t understand why you wouldn’t get a formal diagnosis. It is like having one doctor suggest you have cancer and recommending you go to see an oncologist. Just because you don’t go to the oncologist for a formal diagnosis doesn’t mean you don’t have cancer or the cancer will go away. I believed in my instincts since my son was 2 and did not act or play like other children his age. He received birth to 3 services and has continued to receive services to this date. At age 5 it was suspected that he had Aspergers but I was told he was too young to be sure. He continued to receive services in school and I kept up with appointments with his pediatrician and his developemental pediatrician until he was definitively diagnosed with Aspergers and now also OCD. Over the years, he is almost 9 now, the symptoms have changed a bit; somethings get better, some worse, but treatment has also been adapted to his needs. It is the same as chemo or radiation would change to treat the cancer. Nobody asks for cancer or Aspergers but to not get a diagnosis or even a second opinion is like trying to pretend it will go away or deny that it is there. I don’t think that is the best for any child. I do believe that if your child is not getting the services he needs or being treated the way he should be then you need to fight for what you want and stay on top of it. I’m sure you would if someone was denying cancer treatment for your child. So in my opinion think of it like a medical issue get someone competent who you believe in and trust to give you a diagnosis, get a second opinion and once you have the diagnosis get the best possible treatment and services you can for your child. Bottom line as a parent that is our job.
Comment by Christine — June 14, 2008 @ 11:23 pm
My son was diagnosed with Asperger’s last year at the age of 24. It was a huge relief for us to finally get a correct diagnosis. For Melanie comment 20, Social Security does recognize Asperger’s as a disability. My son is currently getting Social Security Disability benefits for this disorder. He is not eligible for Medicare for two years but, until then, he is getting Medicaid. So, please do not let that discourage you. Also, for Zee, comment 36. I too found it difficult to find a doctor that specializes in Asperger’s. I was extremely lucky to find one that practices in Wilmington, DE. He has been working with my son for about 8 months. We have seen major improvements. We live in NJ, and travel almost 1.5 hours each way to see him on a weekly basis. I know that Wilmington is also a long drive for you but, if you are interested in getting his info, feel free to email me at katedawn@comcast.net.
Comment by Kathi — June 30, 2008 @ 11:23 am