Parenting a Preschooler with Autism

• 3-year-old just diagnosed with mild Aspergers
• Mildly Autistic 3-year-old

3-year-old just diagnosed with mild Aspergers

July 2010

My 3 year old son (turned 3 at end of April 2010) was just diagnosed as being on the autism spectrum and having very mild Asperger's. The behavioral pediatrician who made the diagnosis gave us a xerox of the clinical definition of both autism spectrum disorder as well as asperger's. When I read over the requirements to meet both autism and asperger's disorders, it seems my son is totally borderline. Some of his behaviors fit into some of the categories, but not enough of the categories to meet the actual diagnosis. We are getting a second opinion at the end of July, which should help.

In the meantime, I'm trying not to freak out. My biggest questions are - where does the autism spectrum start? and anyone else out there have a similar diagnosis for their child? It seems from what the behavioral pediatrician told us that my child is barely autistic and he barely has asperger's. Is that possible? So how upset should we be over all of this? I really just don't know what to make of it. Will he be able to grow up to have a ''normal'' life with friends and marriage and independent living?

We're on the wait list to start him at communication works in Oakland this fall for the coming school year, and I'm anxious for that to start. We want to help strengthen whatever areas he's lagging behind in, and help him overcome whatever delays he has. But because this diagnosis seems so ''mild'' - we aren't telling anyone about it (beyond his preschool teachers) for fear that he'll be viewed differently when he might otherwise ''fit in'' just fine.

any advice people can provide would be really helpful. Confused About Diagnosis

I've gotten most of my help and support from my yahoo groups. I would be completely lost without them. I belong to about 7 of them. I'm heavily into bio-medical-DAN stuff which you might not be ready for now (or ever) so I won't recommend specific groups. Just go to yahoo groups and search under autism or asperger's and join up with a bunch. After getting receiving messages, you'll see which groups you find useful and which you don't. If you aren't familiar with yahoo groups (you probably are but just in case) - when you join you choose if you want individual messages or a daily digest - choose daily digest otherwise you'll be overwhelmed. The other tip is to open a new email just for your yahoo groups as your messages are posted with your email address and although most are private some are open to the public. Either way, in 10 years time you may not want your child or others to be able to find any posts. anon

The most important task is to identify your son's deficits and critically review the therapy alternatives when coming up with a game plan. The Autism spectrum is huge in terms of how an affected person functions. Learn as much as you can from your medical providers and from fellow parents. A good website maintained by a local parent is http://www.aspergersresource.org/. Wishing you well

I really connected with your post, as we had a similar situation two years ago with our then-3-year-old son. We had been dealing with what we thought was just a speech delay, then he was diagnosed as ''borderline'' PDD-NOS. Very confusing and scary. We did hours of research, sought out TONS of advice from professionals, and got him as many forms of early intervention as we could - speech therapy, behavioral therapy, occupational therapy. This was all through our school district, and we really had to educate ourselves about special education law in order to receive all the services. What we couldn't get through them, we paid for ourselves.

Fast-forward to now: Our son still has a mild language delay, but we recently had him evaluated by a neuro-psychologist who completely ruled out ANY level of autism. Maybe he never was autistic, or maybe it was all the early intervention - we'll never know. In any case, he is a social, happy, easy-going, smart little boy who is about to start Kindergarten.

So I guess my advice is this: Hope for the best and prepare for the worst. 3 is still very young for an accurate diagnosis, in my opinion. And if it is mild autism or Asperger's, there's every reason to believe he will lead a ''normal'' life and may just be a little quirky. Don't get too far ahead of yourself; just worry about what he needs right now. It will change monthly, sometimes weekly, so be prepared to change course if necessary. Above all, trust your instincts and don't get lost in all the what-ifs. Hang in there, mama! Been there, done that

Don't focus on the labels, but what his individual strengths and challenges are and what additional support he might benefit from.

The advantage of early identification is to help you understand why some things - perhaps the way he communicates with and responds to others - might be different than you'd expect and allow you to get an early start helping him find ways to manage whatever individual differences he has so they aren't as much of a hindrance now or in the future. But the label won't give you a snapshot of who he is as an individual and what he specifically needs to be successful.

When you do choose to share this information - possibly with caregivers and teachers - it's probably most helpful if you go on to say something like, ''So it's sometimes difficult for him to ... and we've found it helps him if we ...'' You can also get them to share with you what they've found helpful.

You should also keep in mind that the designation will help you get special services through your local school district that could benefit your son. I'm not sure about your situation, but the services can begin even before regular school age and may also be available even if your child goes to private school. Parents have a lot of rights in terms of what services they taken advantage.

If the diagnosis is wrong you should certainly get a correct one, but keep in mind that getting rid of the label won't take away any frustrations or challenges you're son has and may make it more difficult to get services.

So I guess there are almost two separate but overlapping questions I would recommend you investigate - the advantages and disadvantages of having the label associated with him, and what are his specific needs and how would they best be addressed. A teacher

First of all, don't freak out at all! You don't say why you sought an evaluation and diagnosis, but it sounds like you're doing the right thing by getting some support from communication works (for social communication skills?). My son, now 17 has high-functioning Asperger's and we understand it to be on the autism spectrum, which is extremely wide (and we're all probably on it somewhere!). Diagnoses can be helpful to get services and assistance but they don't define a person. Just treat your son like any kid with strengths and weaknesses and support/encourage him. You can also simply share your concerns about his development/skills/needs with each teacher as needed. We tended to hold back and see how our son did each year, but teachers told us they appreciated knowing since it helped them figure out what he needed and how to deal with him. Good luck with your journey and enjoy your boy! Kathy

My now almost 7 year old had a similar diagnosis when he was 3. I urge you to contact your school district immediately and start the process to get him into early intervention. Where he places on the spectrum is not as important as whether you can get services for him. It is great that you have already looked into Communication Works, we went there too, but what has been shown to make the biggest difference in spectrum children is 25 hours a week of intensive early intervention. Our son was placed into a preschool program with other high-functioning children on the spectrum. He had a great teacher, and he made huge progress almost immediately once he started.

Tell people as you feel ready. You are going through your own process right now and may not be ready to share his diagnosis with others until you have come to an acceptance of it.

Please try not to worry about the future. It is hard not to, but worrying is unproductive. If you would like to read about someone with Asperger's who is living a productive, independent life with friends and relationships, I recommend ''Born on a Blue Day'' by Daniel Tammet. Feel free to email me as you have other questions. Brenna

Whew you have a lot going on. I have a 14 year old son and we went through a similar process with him when he was young. You are on the right track getting his evaluation and other opinion. At age 3 the main thing is not the diagnosis but the information gained through the testing. That will guide you in how to help your child.

I'm so sorry for the anxiety you're experiencing. I'd like to recommend the blog of another East Bay mom who has written eloquently for the past few years about having a son 'on the spectrum'. She writes very well about the whole journey. http://hyperlexicon.blogspot.com/ thanks & best wishes

I just got an Asperger's diagnosis for my 3 year old, too! I'd love to chat with you about it. I don't have a lot of advice yet, since our diagnosis is only about a month old, but I can certainly commiserate with your stress and confusion.

My 5 year old was diagnosed with Aspergers. I'm finding it all a bit confusing too, especially since the Asperger diagnosis will officially be folded into the autism spectrum disorder category (keyword being that it is a ''spectrum'' and can look different among different kids). Our dev. ped. said to focus less on the diagnosis and focus more on getting the roadmap of interventions to help support them, whatever that may be. We just started at Communication Works and really like it. My take on sharing the diagnosis is to share it as needed with those in a position to help get the support services and with friends/family that ''get it.'' At least up through kindergarten I have felt like expectations have been so loose that my child would not have stood out as different but I am really glad we are starting interventions now because I can already see how the social environment changes in the upper elementary school grades. As for the future, try not to expend the emotional energy thinking about something that no one can predict (especially since living with an ASD kid requires all the energy we've got!)It sounds like the diagnosis is pretty mild so as your son gets older, he will develop skills and build a life that accommodates for his strengths and weaknesses. They'll always be quirky but quirky adults do just fine.You deserve a HUGE! pat on the back for starting this now - I really wish I had started earlier. anon

I have a similar child who is much older than yours. I know this is a hard time and that you are looking for answers. It might help to know that you are confused because the whole concept of what constitutes an 'autistic spectrum disorder' is confusing and vague. You will receive conflicting diagnoses for your child because unfortunately we do not have a lot of research based knowledge about autism and how it is related to neurotypical development. There is no biological test for 'autism' so experts make the diagnosis through eyeballing your kid and each expert interprets the DSM guidelines differently. Also, I know dozens of families who have children with autism and each and every one of those children has very different skills, assets, and deficits. Right now autistic spectrum means so many different things it is losing its usefulness as a term! You should definitely get a second opinion but much more important than the label or diagnosis, try to focus on your child and what he needs to learn how to do to become a well-rounded person with good social skills. Communication Works is a great place to get services and they will help you break what seems like an overwhelming task into small manageable pieces. Best wishes

Our oldest son got a autism diagnois a little before he turned 3. We thought the developmental pediatrician who gave it to us was a little bit of a quack, so we went for a second opinion. The second guy told us that our son was mildly on the spectrum. We had someone else see him (preschool's doing, not ours) who said he was absolutely fine, just smart and having trouble relating to peers because of it.

So, he was either autistic, had mild aspergers, or fine. But what we did know was that he did have some trouble with social relationships so we signed him up for a social skills class which I think helped. We'll probably do it for a second year just to get him on even more solid footing but if we couldn't do it, we would feel okay about where he is. We also worked on having 1-on-1 playdates which gave him a chance to practice his skills. We also didn't tell anyone because we don't want him to be labelled.

As for the future, who can tell? But a friend of mine said something about it not being surprising our son was diagnosed since my husband had a lot of the same characteristics. Which, it is true, he does. But he has a very good job and had a string of girlfriends before me, has some friends, and now he is married with 3 kids. He is a good, sweet kind man and I wouldn't trade him for anything. Anon

We have two kids diagnosed with Asperger's in our family, both 14 now. I would love to be able to chat with you, but i am new to BPN and I'm not sure how to connect? However, I can tell you a couple things here. The diagnoses may be frightening, and we are always taught labeling kids may limit them, but this is not true! Those doctors have given you a great gift. Make sure you have the diagnoses in writing. There are so many services available under ADA, doors will be open that if your child does struggle in large groups or chaotic classes later, you will be protected. Remember this is who he is. That little miracle will have challenges (don't we all), but he will also have strengths. Google Tony Atwood, he's the Guru on aspergers, but there are lots of others. BPS has paid for fantastic ''non public'' schools! Jill

Hello, I don't have a child with Asbergers, but I grew up with my stepbrother who has Asbergers for 15 years in the same house. I have to say that he is one of the most brilliant people I know, extremely kind and curious, and just generally a nice person. He was diagnosed in junior high, but it wasn't until high school that he began to have extra help at school. He had a special tutor that was provided by the school that made sure he got to all his classes during the day. He had a hard time remembering to do basic things, like getting up and going to school, but he scored a perfect score on his SAT's! He is 25 now and lives with his mom (but lived on his own for a few years). He is able to hold a job, but can't drive because he is prone to seizures. He is one of the most intelligent people I know but has a hard time with common sense decisions. I would say that he is a happy person, but he is very special also. I wish you luck and patience, but I have to say that I am happy that he is in my life, exactly the way he is :) Carmen

It is so confusing and scary to get those diagnosis. The good news about a diagnosis is that it may open doors to funded treatments if they are needed. Beyond that, try not to freak out. He is still your same sweet little boy and whatever challenges he has can be addressed. He is not the diagnosis, he has loving caring parents, and he has plenty of opportunity to deal with whatever is going on.

Communication Works is wonderful. They are effective and professional and don't go for the dramatic just for what works. I think you will be very happy.

I too work with kids of all ages with diagnosis and without that have challenging behaviors that either make it hard for them to learn or to socialize/connect or otherwise be at ease in the world. I find that it is important to address the child where he is and not the categorization that he has been placed in. Underlying causes of the behaviors that you refer to as ''borderline ASD'' can be determined and treated.

I would be delighted to talk with you about this and help you come up with some options. One way of looking at this is that you now have some information that you can use to find the best way to help your son be happiest in life. Let me know if you would like some support

A diagnosis of ASD is not a death sentence! I don't say this to be flippant or defensive or cruel, I say it because I was once where you are now and I now have the benefit of it being 6 years later. I know you're freaking out, there's a lot to process here, asking for help is a good place to start.

3 yo is awfully young to get a dx of Asperger's, IMO, but it's simply impossible to say where the spectrum starts; who's to say what ''normal'' is, anyway? As you know there's no predicting the future, but you can feel better knowing that the sooner you start services with a child on the spectrum, the better the long term prognosis will be.

So, try to think of it not as a label but as a tool. There's something going on with your son that prompted you to see the pediatrician in the first place, and now you have this diagnosis which you can use to get your son whatever services he needs; without the diagnosis, services are harder to get. It's a sad but true fact about ''the system.'' But now you can go to your school district and get an IEP and he will be protected by federal law, and with that you can help him with whatever he needs in order to live his life. You are his greatest asset!

Feel free to contact me directly if you have any questions or if you want to freak out with somebody who has freaked out, herself! Jill

I have a son (now 11) who has the same issues. He has very mild Aspergers, diagnosed 3 years ago. Most people who meet him now would never know. Regarding the diagnosis, you can look at it as a blessing. It doesn't change who he has been and who he is, it merely opens up a world of services at school, especially public school. There must be behavioral issues or you would not have sought diagnosis.

I didn't tell him about it until last year and he was quite upset at first but he tells people about it himself now. When he was little he had many behavior issues which were often stressful. Tantrums, pickiness, things had to be a certain routine. As he gets older it gets so much better. We are constantly blown away by how smart, funny, and aware he is. He is an unbelievable reader and interested in just about everything and able to entertain himself for hours. And yes, he is finally making friends. It is important to have perspective and to know that it gets better. Do not sweat the small stuff, choose your battles carefully, and make sure his teachers are not head-butters, but understand his thought processes and what makes him tick. Who his teachers are is extremely important, I can't stress that enough. Good luck.

I'm fairly certain that we will be in the same boat as you are when my son gets and official dx in a few months. He's been in early intervention services and is making amazing progress. A lot of his more worrying autism red flags seem to be fading away a bit. I've realized that whatever the diagnoses, he'll be ok. He's smart and sweet and will still be the wonderful person that he is - despite whatever challenges come his way. If you think about it, every person has his or her own challenges to overcome. You'll be lucky, because you can read up and understand the challenges and learning differences that your son may have and be able to help him.

I won't be surprised at all if I'm told my son has Aspergers or is borderline. I was researching it a few months back. (I hadn't paid too much attention to Aspergers as my son has a speech delay and Aspergers kids tend not to have speech delays -- although, I believe they're reclassifying that.) Anyway, I looked up Aspergers symptoms in adults, just to understand what challenges adults face. It basically described my husband! I almost fell over, but it made so much sense. It also shed a lot of light on his father (my father-in- law) as well. After the initial shock and head-spinning (I still haven't mentioned it to him), it was actually a comfort. My husband is warm, gentle and loving and a wonderful father. He has a great job and lives a happy life. There is nothing 'wrong' with him. I've always known that he's wired in a totally different way than I am. I think my son is wired like his dad. As his speech therapist told us -- autism is a difference in learning style. So you're lucky that you'll understand how your son learns. I think you're right not to tell people for now. We've kept it to ourselves too. But I think it's a question I'll really struggle with. It's a shame we can't get in touch with each other. Perhaps through the moderator? Good luck. Anon

Try Care Parent Network, Martinez, Ca (Louise Schneider) for Asberger support groups or

Elizabeth Sautter, M.A., CCC Speech Language Pathologist/Director

Communication Works Speech* Language* Social Learning 4400 Keller Ave, Suite 200 Oakland, CA 94605 510.639.2929 phone 510.639-2977 fax

Education.com has a great special section on Aspergers right now. I found some really helpful articles. Will give you some good insight. They even have articles on 'after high school' and reflections from people with Aspergers. Hope this helps. http://www.education.com/special-edition/aspergers/ -I get it

I was surprised by the responses you got, since they mostly didn't address your doubts. A second opinion is a very smart idea, and you may also need to be patient and see how he develops. My son, now in college, was given a diagnosis of an autism spectrum disorder when he was ten or eleven.

Although we accepted and worked with the diagnosis through middle school and most of high school, it turned out to be completely wrong. During those years, many ''experts'' believed that he had mild Asperger's and others said he had some sort of atypical high-functioning autism. They all leaned on the ''spectrum'' part of the diagnosis to explain why he was so unlike the other kids with Asperger's/HFA/NLD at school. He was not helped at all by this incorrect diagnosis, which led to ineffective treatment, lowered or inappropriate expectations, and a great deal of frustration (and justifiable anger on his part). He only began to reach his potential in a setting where some smart, experienced people were willing to approach him with a clean slate and figure out from scratch what works for him. Good idea to keep the diagnosis private for now -- I can't tell you how many people out there probably still believe my son is autistic. Hopefully you will learn more once the speech and language people have had a chance to work with him for a while. One thing we learned is that science still doesn't know all that much about the brain, though they're discovering so much all the time. There may not be a name for whatever your child is experiencing. There's no specific diagnostic label for our son, though the people who were successful with him can describe in detail the types of language processing difficulties he has (which are quite different from the language issues associated with the autism spectrum).

There is a poetry chapbook by Rebecca Foust, Dark Card, about a son who is on the Spectrum. It gives a lot of insight about her feelings as a mother, as well as her son's experiences. Carol

3-year-old's patterning behavior -- Asperger's?

Feb 2000

My sister's oldest child, who will be four in April, has been exhibiting patterning behavior, or repetitive activities, since she was a toddler. In her case, this has included flapping her arms vigorously, running back and forth, or getting stuck on a thought that she won't drop. The running and flapping usually occurs when when she is excited, switching to a new activity or relating a story or singing. She is a bright child, ahead of her peers in language and number skills, and she has a good sense of humor. Over the years, they have consulted with their pediatrician, who has taken a wait and see approach, at least until her language skills are more developed (age 4? age 5?). However, my sister's mother-in-law, who teaches at a school where they are tuned in to developmental problems, does not agree with the doctor, and has been sending my sister information on Asperger's Syndrome, which apparently is something like a mild form of autism. Also, my sister says more and more adults are commenting on the behavior, including her daughter's pre-school teacher, who says that at age three the children are pretty oblivious to what might be considered odd behavior in other children, but by age 4 they start noticing. My sister is worried about what effect this will have on their daughter. To date, they have tried not to make an issue of the flapping, etc., because they don't want to complicate things for their daughter by making her self-conscious. Has anyone had experience with this? Advice?

I would urge your sister strongly to have her child evaluated by a good child psychologist. Early diagnosis and treatment is tremendously important to a child with neurological, psychiatric or psychological problems. I wouldn't dream of 'diagnosing' from this distance, even if I were competent to do so. But my personal experience with such problems leads me to encourage your sister to be aggressive in pursuing an evaluation. The secondary effects of an untreated disablity or other problem can be very damaging to the child and to the family, sometimes even more so than the primary problem. (Two good, short and very readable books on this are The Social Side of Learning Disabilities and Learning Disabilities, A Family Affair, both by Betty Osman.)

The point I want to stress is that a parent really is in a better position to sense that a problem *may* exist than anyone else. We can't diagnose our children but we spend so much time with them that we have a much fuller picture of their behavior than any professional can hope to have. Thus, a parent's persistent feeling that there may be a problem, or that their child is off somehow, should be taken seriously. Parents who are concerned about behaviors like you describe should have their child checked out, especially when the issue or behavior has persisted for a year or more and they are getting the kind of feedbackfrom others that you describe.

I also want to caution against the impulse to defer to the pediatrician who says wait and see later. There are a few pediatricians who specialize in neuropsychiatric evaluation and the like, but by and large this is simply not a part of the mainstream pediatrician's active skill-set. I would not refrain from pursuing a concern on the basis of a pediatrician's wait and see advice, although I would take very seriously a positive recommendation for further testing from that source.

Last, I want to emphasize that the decision to get an evaluation is not a big deal. Competently handled it will not trouble the child or make her self-conscious. While I wouldn't embark on (or advocate) a course of *treatment* without a professional recommendation that I trusted, some parental aggressiveness about testing and diagnosis is not a bad thing. We have to be advocates for our little children. The worst that happens is your sister would pay for an hour or two of a psychologist's time and then be able to rest easy whatever the resulting advice.