"How can a parent tell whether or not her preschool daughter has high functioning autism? I’m beginning to have my suspicions!"
There is no single, uniform presenting picture of High-Functioning Autism (HFA) in the first 3-4 years of life. The early picture may be difficult to distinguish from typical autism, suggesting that when evaluating any young girl with autism with apparently normal intelligence, the possibility should be entertained that she may eventually have a picture more compatible with an HFA diagnosis.
Other girls may have early language delays with rapid "catch-up" between the ages of 3 and 5 years. Some of these young people (especially the brightest ones) may have no evidence of early developmental delay (with the possible exception of motor clumsiness).
In most cases, if you look closely at the girl between the age of about 3 and 5, clues to the disorder can be found, and in most cases a comprehensive evaluation at that age can at least point to a diagnosis somewhere along the spectrum.
Although these young people may seem to relate quite normally within the family setting, problems are often seen when they enter a preschool setting. For example:
appearing to be "in one's own little world"
difficulty regulating social/emotional responses with anger, aggression, or excessive anxiety
difficulty with transitions
having a preference for a set routine
having odd verbal responses
hyperactivity
problems sustaining simple conversations
tendency to avoid spontaneous social interactions
tendency to be perseverative or repetitive when conversing
tendency to over-focus on particular objects or subjects
tendency to show very weak skills in interactions
In reality, this list is much like the early symptoms of autism. But, compared to the autistic child, a girl with HFA is more likely to show some social interest in others, will have less abnormal language and conversational speech, and may not be as obviously "different" from her peers. Also, areas of particularly strong skills may be present (e.g., letter or number recognition, rote memorization of various facts, etc.).
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
As a parent with a child on the autism spectrum, you have probably already figured out that kids with Asperger’s (AS) and High Functioning Autism (HFA) are often easily upset by minor circumstances. They may cry at the drop of a hat, or crumble when the parent raises his or her voice at them (even slightly). They seem to have a bionic sense of smell, and want all the tags pulled out from their shirts. They enjoy quiet play more than big and noisy groups, ask lots of questions, and are incredibly perceptive – noticing all the minor details of life.
These children may have even been labeled as "shy" or "highly emotional" by parents and teachers. But before you write-off these “special needs” kids as drama queens, consider the fact that these behaviors may part of their disorder.
Parenting highly-sensitive AS and HFA youngsters can be challenging. These kids are often tender-hearted, easily upset, and fearful of many aspects of everyday life. They are often wonderful, caring and loving children who feel emotions deeply, and care about things that their peers seem oblivious to. They are often born with these traits, and it is usually obvious to their mom and dads that they have been highly-sensitive from day one.
The highly-sensitive AS or HFA youngster tends to have many of the following characteristics:
asks lots of questions
complains about scratchy clothing, seams in socks, or labels against the skin
considers if it is safe before climbing high
doesn't do well with big changes
doesn't usually enjoy big surprises
feels things deeply
has a clever sense of humor
is a perfectionist
is bothered by noisy places
is hard to get to sleep after an exciting day
is very sensitive to pain
learns better from a gentle correction than strong punishment
notices subtleties (e.g., something that's been moved, a change in a person's appearance, etc.)
notices the distress of others
notices the slightest unusual odor
performs best when strangers aren't present
prefers quiet play
seems to read the parent’s mind
seems very intuitive
startles easily
uses big words for his or her age
wants to change clothes if wet or sandy
Sound familiar? Have you often wondered if some of these traits were due to your “bad parenting” or some other unknown cause? Not to fear.
Here are 25 important tips for assisting your highly-sensitive child on the autism spectrum:
1. Embracing your youngster as a highly-sensitive individual is step #1. Many moms and dads bring highly-sensitive AS and HFA kids to therapy in order to "change" them into less sensitive, more typical children. This simply can’t be done. Being able to see their sensitivity as a gift and accept it as part of your shared journey (whether you yourself are highly-sensitive or not) is the proper perspective to have.
2. Add structure and limits to your empathy. Empathizing with the youngster's plight helps him understand that you feel his pain. Adding structure and limits shows that, while you understand his frustration and anger, some of his behaviors are not acceptable and require that he handles them in a more appropriate manner. For example, when your youngster won't go to bed and is becoming aggressive about it, you can calmly say, "You are going to sleep now." As the youngster progressively becomes more aggressive and complaining, acknowledge what he said, and then repeat your original statement: “You are going to sleep now.” For example: Child says, “But I want to finish playing that game!” Parent says, “I know that you want to play longer, but you are going to sleep now.” Continue to repeat this over and over again if needed (similar to a CD in player that repeatedly skips over a particular spot).
3. Develop a partnership with your sensitive child. Love and accept her unconditionally. You can’t change who she is. She needs to know you love her no matter how she perceives or reacts to the world. Partnering with your youngster includes learning her triggers (e.g., sensory sensitivities), avoiding them, and also giving her coping tools when she feels overwhelmed (e.g., breathing exercises).
4. Most children on the autism spectrum don’t like crowds. Crowds are known to be “meltdown triggers.” So, as much as possible, avoid the mall, supermarkets with bright lights, and going into places where there might be swarms of people or over-stimulation. Perhaps you can do things in “off hours” or plan them when there will be less people.
5. Try to avoid situations that are tremendously distressing, but within reason. Don’t “force” your sensitive youngster into situations that make her feel upset. While you likely mean well and hope to conditioner her against these situations, they can cause her to withdraw further. For example, if you want your youngster to be less sensitive at school, pushing her is going about it the wrong way. Instead, gently nurture and introduce her to coping strategies that will help her manage her sensitivity at school.
6. Work with your youngster to create ways to interact with the world safely. For example, he’ll likely have an easier time interacting with classmates 1:1 than in larger groups, so set up individual play dates so he gets comfortable with several classmates. Highly-sensitive AS and HFA kids are drawn to other "birds of a feather," and getting these children together to nurture each other's strengths is a good thing. This may mean a little extra effort on your part to help the youngster make play-dates and find other children that play well with highly-sensitive peers.
7. Since highly-sensitive AS and HFA kids are majorly impacted by their home and school environments, it is worth taking the time to create spaces that match their comfort level. For example, Kyle (a 5-year-old child with Asperger’s) is highly-sensitive and loves his "Calm Corner" at home where he relaxes with his headphones, favorite plush toys and markers to feel calm. It is this type of serenity that highly-sensitive kids crave with just the right lighting, colors, sounds and surroundings.
8. Encourage self-observation. Oftentimes, AS and HFA kids feel overwhelmed by their emotions and have a difficult time putting a name to the emotion. For example, when your youngster says he is angry because his sister wouldn't let him play with her friends, you can encourage him to place a mental image to his anger so he can easily identify it the next time he feels it. Putting detail to feelings helps your youngster more accurately describe his feelings.
9. Encourage your youngster to become more assertive and in control. When a youngster feels helpless and experiences feelings of despair, he often feels like he is not good enough, that no one likes him, and that he is not worthy. Begin by empathizing with him (e.g., "I have days when I feel the same way"). Once you've shown that you are on his side, encourage him to figure out how he could better handle a similar situation in the future so he feels more assertive and masterful of the situation.
10. Explain to your youngster why he may feel sensitive and why some things trigger him to feel sad or upset. Talk about grades and testing and how they help to measure his progress. Let him know that his teacher is trying to help. Explain that other kids may taunt and tease because they are unhappy or sad themselves, and teach him about understanding. Explaining the reasons for each episode of “high sensitivity” can help your youngster manage his reactions to different stressful situations.
11. Reminding yourself that your highly-sensitive youngster is an incredibly talented individual is essential – especially when she is "acting out" because of feeling overwhelmed or emotionally upset. This is seeing the forest instead of the trees. Training yourself to see your youngster's strengths first (e.g., her incredible creativity, perceptiveness, keen intellect, etc.) is important because it helps you accept her challenges (e.g., being highly emotional, shy, picky, overly active, etc.).
12. Being “highly-sensitive” is actually a stigma, so it’s important not to “label” your youngster. Help her understand that she experiences the world more deeply than most kids, and help her see the strengths associated with this. She may notice things most people don't, have a better imagination, focus or concentrate better, be a gifted student, or empathize and be sensitive to others. These are all examples of strengths.
13. Just because your youngster is highly-sensitive doesn't mean he doesn't need structure and limits. Being able to give your youngster gentle structure and clear limits with respect goes a long way. For example, if it is “homework time” and he is resisting, you can say, "I realize you want to play video games all evening, but it is time to do your homework. We have agreed to the 6:00 PM study time – and it is 6:00 PM. So please get your books and papers ready.” This is an example of gentle discipline versus punishment.
14. Give choices. Giving your youngster choices helps her feel a sense of control (which is important, because most of the time she may feel like she has no control). For example, you could say, “Okay. It’s time for bed now. If you want to read in bed for 20 minutes before lights out, you need to take a shower, brush teeth, and comb hair now. It’s your choice.” Choices help AS and HFA kids feel empowered in their otherwise chaotic world.
15. Highly-sensitive AS and HFA children need their own space. They often like to play alone. And after a long day of school, most want to chill out. Be sure to give your child some downtime just to recuperate after a busy day.
16. Make an appointment to talk to your youngster's teachers in private. Talk about your youngster, some of her triggers concerning her sensitivity, and what the teachers can do to help her when she becomes distraught. This can help put your youngster's teachers on alert so that they know what to watch for to make school a better experience for your youngster.
17. If you need to make changes to your youngster’s environment (e.g., redecorating his bedroom), make them little by little. He will feel less overwhelmed as a result.
18. Most highly-sensitive AS and HFA kids get easily distressed when they have to make a decision. They often reject opportunities out of fear. Sometimes the best thing you can do is nudge your youngster to take a risk or try something new. If your highly-sensitive youngster knows you will be there for her and love her no matter what she is feeling, she will have less hesitation in new situations, and will be less self-conscious or risk-averse. If she knows you’re not going to push her to be something she’s not, you’ll both be a lot more relaxed and prepared for the rough spots ahead.
19. Sensitive kids on the autism spectrum respond far better to “requests” rather than “demands.” Parental demands can elicit the exact behavior you are trying to avoid (e.g., emotional meltdowns, outbursts of energy, temper tantrums, etc.).
20. Many AS and HFA children are very sensitive to what people say to them, and who spends time with them on a regular basis. The children that get regular “play time” with a parent feel stronger, more self-confident, and are able to face the world from a place of inner strength versus weakness.
21. Most AS and HFA children love to be creative and playful, whether it is creating a new video game, painting, singing, or discovering their unique talent. The sooner that you match your child with a creative outlet that she loves, the sooner you find someone who has a “place to rejuvenate” and heal herself from the harsh world out there.
22. Instead of viewing your "sensitive" youngster as being inherently flawed, see him as having a special gift. Sensitivity is typical of creative artists and innovators. Some of our greatest thinkers (e.g., Carl Jung, Joseph Campbell, Abraham Lincoln, Eleanor Roosevelt) are believed to have been highly-sensitive.
23. Highly-sensitive AS and HFA children need grown-ups to help them (a) manage their rich emotional lives, (b) let go of overwhelming feelings in a healthy way, (c) develop their “special gift,” and (d) gain insight into doing the things that make them happier. Ideally, this “happiness teacher” is their mother or father (but it can be some other trusted adult, too).
24. Work together with your husband or wife to create a home environment with the following 5 elements:
self-observation
encouragement
empathy
structure
limits
These 5 elements help greatly when dealing with a highly-sensitive AS or HFA youngster.
25. The best that a parent of highly-sensitive youngsters can do is to accept them for who they are, and try to teach them to manage their life in as balanced a way as possible.
In conclusion, remember that highly-sensitive AS and HFA kids should never be ridiculed or punished for their feelings and sensitivities. If their feelings have been hurt, acknowledge that. Their feelings should not be disregarded simply because you may not see the logic behind them.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
• Anonymous said... Validation is an incredibly important tool. It will take my daughter from 60 back to 0 in minutes. Just knowing that I understand how she's feeling really allows her to calm down enough to talk through the situation. • Anonymous said... As a grandparent to an AS/HFA child, when they start getting upset, validate their feelings instead of criticizing them for what lots of people think is bad behavior. Understanding what has upset them is truly amazing since a good portion of the time, they are not upset for something in the moment but rather something that has stayed with them for much longer. • Jackie said... This is my son to a "T". Thank you for validating him, and my observations. • Whitney said... This is very is very insightful as I am currently in awaiting approval for my son to be accepted by a developmental pediatrician. He is a very sensitive kid who struggles with sensory issues and has meltdowns at school, plays with more than one child, change occurs, socially awkward, or his routine is broken...most adults love him and younger kids, but kids his age do not understand his big heart. Thank you for posting.
Asperger’s (high functioning autism) is a lifelong developmental disorder, but ironically, most research studies on the disorder have been cross-sectional (i.e., they only provide a snapshot of what it looks like at a single point in time). Why?
Because following people with Asperger’s and HFA over long periods of time is expensive and requires a lot effort on the part of families and researchers, which is unfortunate since long-term studies are the only way to understand what early-life factors help some kids with the disorder do better than others over the long haul (something that can’t be assessed in cross-sectional studies).
Thanks to new statistical techniques, researchers can now group their study participants based on shared characteristics that unfold over time. A handful of long-term studies, each including up to several hundred participants, have now followed individuals on the autism spectrum for nearly 20 years. As the young people in these studies come of age, researchers are piecing together how the disorder progresses through the life span. Let’s look at a few of these studies (in no particular order):
Study #1: The researcher assessed cognitive skills in 37 kids on the autism spectrum and average IQ. She found that kids between 4 and 7 years of age who have the strongest “executive function skills” (i.e., skills required for planning and carrying out complex tasks) also have the strongest “theory of mind” (i.e., the ability to understand others’ thoughts and beliefs) 3 years later. The study suggests that improving executive function skills in kids with Asperger’s (HFA) may also yield benefits for “theory of mind.”
Study #2 showed that kids whose moms and dads are more engaged in their treatment early on have better verbal and daily living skills as teenagers. Unpublished data showed that the kids with the best outcomes (e.g., able to attend college with no extra support) all had moms and dads who had been involved in their treatment beginning at age 2 (this should not be interpreted as assigning blame to parents if their kids do poorly though).
Study #3 revealed that adolescence is a time of behavioral and symptomatic improvement for some Asperger’s and HFA teens; however, this improvement slows down around the time the teens leave high school. This may be in part because (a) the structure and routine of school is beneficial for these teenagers, and (b) these young people frequently lose access to services around the time they finish school.
Study #4 followed about 300 participants from age 2 to 21, and found that about 10% improved dramatically by their mid-teens. It should be noted that these young people tended to (a) start out with a high verbal intelligence quotient and (b) improve their verbal skills early on. This is supportive of other studies suggesting that language skills and IQ are the strongest predictors of a youngster’s outcome.
Study #5 was a longitudinal study that tracked 39 kids on the spectrum from about age 4 to age 19. Analysis of the data suggests that building “theory of mind” skills may help kids who start out with poor language skills overcome their deficits. These findings are typical of the way researchers are using longitudinal studies to analyze how changes in one area of development influence another.
Study #6: According to yet another study, most teenagers and grown-ups with Asperger’s have less severe symptoms and behaviors as they get older.
It has long been the hope of moms and dads with Asperger’s and HFA kids that the right care and support can reduce - or even reverse - some of the developmental problems associated with the disorder. But, while studies find that behavioral intervention programs are linked with improved social skills, the question of whether kids can technically “outgrow” the disorder remains difficult to answer. Studies to date that have hinted at this possibility are fraught with questions about whether the kids who apparently shed their autistic traits were properly diagnosed in the first place.
Who better to poll than the people who grew up on the autism spectrum? So, we asked a few young adults with Asperger’s to address the following question: “Was there a reduction in Asperger’s-related symptoms as you got older, or did things tend to get worse?” Here are their responses:
“Although the condition remains a constant certainly, the expression can change over time. At times, I might seem quite neurotypical (albeit shy) and at other times....well, the opposite. From my own personal observation, I have days when I really seem to "read" others better and other days are not. Certainly I've had really rough periods, but inside I am still the same.”
“Asperger's is actually supposed to get easier to manage as the person gets older. This isn't to say, however, that big set-backs can't happen. The truth is that they WILL happen. I have improved overall since my teenage years, but this 'improvement' has brought with it two suicide attempts and many really low moments too.”
“For me, when under stress I'm just not able to put in the effort to initiate my coping mechanisms. Some of them are automatic (e.g., blocking out too much sensory input) and fail when I'm under stress. The net effect is my autistic nature affects me worse - it's not that I'm any more autistic, it's that my coping strategies aren't working.”
“From my experience I have gotten more aspergery every year since 16 years old, however I got less every year from 11-16, which was high school. So the high school environment must have made me much more NT, almost certainly because I was in a group of NT guys the whole time. Now as I get older the differences become increasingly apparent and it's increasingly harder to relate to people and to tolerate society. A lot of things changed around, for example when I was young I used to collect rocks and I was much more verbose for my age, now I find it harder to relate to people though and I have more social anxiety. I'm sure AS traits will continue to switch around as I grow. I think a part of it is the people you have in your life and the way you see yourself.”
“I don't necessarily think your Aspergers gets worse as you get older, or better for that matter. The things you're doing and the skills you've learned can either help you manage your condition, or make things go out of control. Stress fluctuates, and stress/anxiety makes our coping mechanisms less effective. So, sometimes, it looks like we're getting worse as we get older because there are life changes that are very stressful... spouse, kids, home, job, etc. The longer you work, the more "upper level" you are generally expected to become, so you get promoted into a job that has more social interaction.”
“I don't think it is a matter of AS getting worse (at least in my case), so much as comorbidities and just plain life making it harder to compensate for. It's tough to do anything when you also have to deal with depression or anxiety. I know that during the very stressful times in my life, it was extremely hard to deal with the negative effects of AS on top of it all. Changing jobs, graduating, recuperating after a bad relationship, etc. I found that my ability to compensate and adapt could at times drastically decrease.”
“I think I have improved some things over the years what are related to my disability, for example I am better at handling my special interests at a ''safer'' level. By that I mean when I was aged 13-15, I got obsessed with some local people who lived next door to my cousin. I started this obsession, and got to a point where I tried getting really involved in their lives (in other words, stalking), and it got too ''freaky'' for them (plus they had a baby), so they went to the police station and reported me. The obsession got so out of hand, and I went on about this couple to people at school - who got so fed up with me that I did lose a lot of friends because of it. Now I am obsessed with some people who I didn't know before (these are bus-drivers), but they don't know it. So I have learnt to keep my obsessions under control more - which is one improvement. I'm proud of myself there.”
“I would have to say it is up to the individual. Though technically Aspie symptoms are supposed to get better with age, your will to constantly struggle with it can weaken. Some Aspies choose to give up and seclude themselves and with no social interaction to keep your symptoms in check. And some Aspies are perfectly content like this… it's all about what makes you happy.”
“In some ways it seems like I’m getting more autistic as I get older, and in other ways less. My autistic traits have mostly just moved around, and in some cases just show up differently. As a kid I didn't stim much, at least not noticeably. Now I stim A LOT. But I’m more tolerant of certain sensory things... My social abilities have improved a little as I’ve gotten older and learned things, and I’ve gotten more outgoing around people. So, I talk more sometimes, but that means that I'm more likely to make mistakes in socializing and that my special interests are more obvious to other people. When you're an adult there's more stuff expected of you than when you're little, so my problems with life skills are more apparent now.”
“It doesn't get worse, but it may seem like it does because there is the anxiety and the depression. Depression makes your AS symptoms worse. It's just an illusion.”
“I've found myself becoming more isolated as time goes on. I think in school you have friends (often with similar traits) but once you leave, your true nature slowly takes control. If you are stressed or don't like being around people much, then you will inevitably find solitude. I'm not sure if things have gotten worse regarding my aspie traits or if I'm just more aware of what they are.”
“I've had some 'worsening,' but it's not been like a path back to where I was when I was younger. It's just different. Even though I have cognitive losses, I still have what I learned when pushing myself hard to interact with people. As a teen, I found interacting even with store clerks to be terrifying, but I eventually learned how to deal with it, and it remains not-a-very-big-deal, today. And, I can still even manage short bursts of small talk (though it is still exhausting).”
“Periods of high stress definitely regress my symptoms, my obsessions become more intense and impulsive behaviour harder to control. You lose those management skills developed over many years. I would say yes, your AS can appear to deteriorate (get worst) during periods of high stress throughout life.’
“Stress is my culprit. All of the coping strategies I've learned over the years shut down systematically as stress increases. Verbal communication is the first to go... I do not desire it, I shy away from it to the point I finally don't bother to speak at all. Meltdowns start to increase. Auditory problems seem to get more sensitive. One by one, it seems to be getting worse. But, if I can eliminate the stress, my ability to cope increases. I don't think there is any literal change in my challenges, only my ability to deal with them.”
In working with clients on the autism spectrum over the years, it has been my experience that many of these individuals do not get worse over time. In fact, it often gets somewhat better with time as they learn some coping skills that they lacked earlier in life. Most people with Asperger’s and HFA tend to gain these skills by default as they age (the concept of “the longer you live, the more you learn”).
Having said this, there does seem to be a period of time (lasting about 5 – 10 years) post high school where there is an increase in symptoms (e.g., anxiety, depression, isolation, etc.). As suggested in the information above, this may be due to (a) the loss of structure provided by regularly attending school, and/or (b) the absence of frequent association with “typical” peers. But, by the time these young adults reach their mid-to-late 20s, many find that the accumulation of life experiences has helped lessen some their (unwanted) Asperger’s-related symptoms.
However, the exception to this (again, based on my practice) seems to be those who are unemployed, not attending college or some other form of continuing education, and still living with their parents. This suggests that being insulated from the community (i.e., isolation) exacerbates the symptoms - and possibly stunts emotional growth due to the lack of ongoing, multifaceted life experiences.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
• Anderson D.K. et al. Am. J. Intellect. Dev. Disabil. 116, 381-397 (2011) • Bennett T.A. et al. J. Can. Acad. Child Adolesc. Psychiatry 22, 13-19 (2013) • Georgiades S. et al. J. Child Psychol. Psychiatry 54, 206-215 (2013) • Gotham K. et al. Pediatrics 130, e1278-e1284 (2012) • Green S.A. et al. J. Autism Dev. Disord. 42, 1112-1119 (2012) • Pellicano E. Autism Res. Epub ahead of print (2013) • Smith L.E. et al. J. Amer. Acad. Child Adolesc. Psychiatry 51, 622-631 (2012)
There is no single, uniform presenting picture of High-Functioning Autism (HFA) in the first 3-4 years of life. The early picture may be difficult to distinguish from typical autism, suggesting that when evaluating any young girl with autism with apparently normal intelligence, the possibility should be entertained that she may eventually have a picture more compatible with an HFA diagnosis.
There is no single, uniform presenting picture of High-Functioning Autism (HFA) in the first 3-4 years of life. The early picture may be difficult to distinguish from typical autism, suggesting that when evaluating any young girl with autism with apparently normal intelligence, the possibility should be entertained that she may eventually have a picture more compatible with an HFA diagnosis.
.jpg)
