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There are so many things to consider when you have a child that is diagnosed with autism. Most parents report that they are initially flooded with lots of emotion. It can be overwhelming to find out that your child will need additional resources for behavior, academics, speech, and motor skills. Being a parent of children who do not require any additional help in these areas is already a busy occupation. Depending on how much therapy is required, a parent of a child with atypical development, will often realize that they have involuntarily begun a part time job, sometimes a full time job, of navigating the symptoms and treatments of autism. This can be lonely, and draining physically and emotionally.
Read on for some tips about what you should do and what you should NOT do as you adjust to a brand new ASD diagnosis.
Take Care of Yourself
DO take some time for yourself to process all of the feelings that you have about the news that you’ve received about your child. It might take some time to really wrap your mind around the facts. There is no rush to find all of the right answers and all of the right people to work with your child. Helping your child with autism is a lifelong commitment. So, spend some time with your family and take whatever time that you need to figure out how you and your family would like to approach everything from therapy to school issues.
DON’T try to make all of the arrangements immediately or all at once. It would be a good idea to sit and talk with your spouse or significant other to figure out what appointments will be needed in the upcoming months. Once you have an idea of how you would like to proceed, create a to do list in order of priority. Pace yourself, take one task at a time and you may find that some of the items on your list may drop off as you begin to speak with various doctors, specialists, teachers or other parents.
DO make time for communication with your spouse or significant other. If you are a single parent, connect with someone who is a good listener; someone who is compassionate and understanding. If you reach out to a friend or a family member and the conversation consists of negative commentary, blaming or “horror stories” that someone has heard about someone else or something in the news- politely end that conversation and find someone else to talk to. There is nothing more frustrating than already feeling overwhelmed and then calling a relative that says something insensitive due to a lack of education or information. Comments like, “It was probably that vaccination you gave him….. I told you that stuff was bad!” or “Autism!? Where did THAT come from, your side or his side of the family?” These types of comments are not helpful and they will only serve to make a parent feel like they are to blame for something “happening” to their child. The truth is, autism has never been connected to a vaccine by any substantial evidence and what good will it do to figure out what side of the family a condition comes from? None at all. The child has a diagnosis and the focus should be on finding the right resources to help the child with autism.
DON’T fault your spouse or significant other. Blaming someone you love rather than coming together and supporting one another through this season will only add more stress to an already stressful situation. As research has shown, it is alarmingly evident that parenting a child with ASD seriously affects a person’s stress levels, and marriage, with divorce rates being 10% higher in families living with a child on the spectrum.
Keeping this in mind you will want to pay extra attention to your relationship and put in the work to stay connected. You will feel stressed at times because that is a very human response to an overwhelming and new situation. Worries about school, the future, friends, family, doctors, insurance, and money are inevitable. Exercising self control and avoiding finger pointing, or lashing out may be difficult in the moment, but it will pay off in the long run. Lock elbows, encourage each other, join together, and show respect to your partner, or spouse. Everyone will be happier.
DO take care of your own health first. This is not a selfish suggestion. It is absolutely necessary. Remember the oxygen on an airplane metaphor: if oxygen masks drop down in front of you on a plane you MUST put yours on first or you will not be helpful to anyone around you who might need help. The same applies to your health and well being as a parent or caregiver. You cannot solely focus on your child with autism while you neglect your nutrition, your exercise or your hygiene. If you neglect your own care, you inevitably put your own health at risk and you will not have the mental faculties or the energy to accomplish all that needs to be done to care for your child with autism. The secondary benefit to keeping your health and appearance together is that you set a good example for your child with autism who will need to see modeling of appropriate behavior including self care.
DON’T take everything you hear from the internet, other parents, and unlicensed “advisors” as gospel truth. Parents who have a child with a new diagnosis of autism tend to read every article, every book, reach out to other parents, fall into conversations with “nutrition experts” and veteran parents with children who have autism. Once you start talking to others about your child, you will start to see a pattern of “experts” that will surface and offer unsolicited advice. As a new parent of a child with autism, you will feel like you need to listen to everyone and take notes. You do NOT have to listen to everyone else’s advice. What works for some families might not work for yours; in fact, what “works” for someone else might not really be working at all. For example, a certain diet that one parent swears by might seem “miraculous” to that parent yet everyone else that is in contact with the same child does not see any changes. Be careful who you take advice from. If something sounds crazy- it probably is. Politely excuse yourself from the conversation and continue to pursue the professional help that you need for your child with autism.
DO start treatment as soon as you can. Educators and therapists know that the best outcomes are always connected to children with autism who received autism treatment at the earliest age possible. Autism research and medical advances have developed to the point that pediatricians can screen a child for autism as early as 6-12 months old and refer them for services at that young age. The advantages of starting behavioral therapy at the earliest age possible is that it can help to shorten or close the gap in speech, communication, social skills and behavior much sooner than it would be possible with an older child.
The same applies to academics with regard to early intervention. Students with ASDs or other learning disorders that are identified in preschool through first or second grade are more likely to learn how to conduct themselves in the classroom, overcome academic struggles and mainstream into the general education classrooms much sooner than students who are not identified in the early elementary school years.
Don’t wait to bring developmental questions, suspicions or concerns up with your doctor. If you notice any delays in academics, behavior, speech, or development in your child with autism, bring it to the attention of your pediatrician or school staff as soon as you notice a problem. Evaluations can be arranged to see if your child is in need of or eligible for special education services or medical intervention. Early intervention is always better for closing the gap between their deficits and their peer’s development and grade level performance.
Parenting and Teaching a child with Autism?
Do consider the developmental deficits that your child or student is functioning with. There are times when you are raising or teaching a child with autism that the behaviors are so constant or difficult that it becomes easy to forget that the child is functioning with a deficit. It’s even more difficult if a child has high functioning autism and functions well in most ways yet has times when their behavior baffles you. Remind yourself as a parent or teacher of the child’s diagnosis of autism. When these behaviors occur, remember that this is exactly “why” the child is in special education or in behavioral treatment with therapists. Take a deep breath and communicate with the child from a different perspective- one that is filled with patience, understanding, and a willingness to use difficult moments as teachable moments. This doesn’t mean that the child should be excused or allowed to misbehave without consequence “because they have autism”. This leads us to the next point…
Don’t ignore and excuse your child or student’s behavior simply because they have autism. As much as we have to protect and guide children with autism, we also have to teach them. When your child or student displays an inappropriate behavior, correct them immediately. Never let something go just because the child is “special”. Teach them at whatever level they are at. It could be an explanation as to why something was wrong. Or perhaps they just need redirection away from something negative. Teach constantly and guide them in the right direction with positive affirmations when they do something right.
Do focus on achievements, progress and appropriate behavior. Parents and teachers can get in a bad habit of focusing on correcting behavior so much that they forget to say something when behaviors are good! It is exhausting when you are trying to teach a child with autism to respond appropriately to situations, focus attention on tasks or sit calmly with the rest of the class. After ten or fifteen corrections, you might feel like you need a break but stay vigilant! As soon as that child does something positive and appropriate make sure you do not miss the opportunity to praise them verbally, or reward them with a preferred activity or item. This is the whole idea behind positive reinforcement. Over time, if there is enough positive reinforcement for the appropriate behaviors, the child is likely to keep responding appropriately in the future.
Don’t label your child or student or add “he/she has autism” after you introduce them to new people. Parents do not owe anyone an explanation as to why their child seems a little different. Teachers are obligated to keep student information private. Adding an explanation after a child’s name is a bad idea for many reasons- but here’s two. When you introduce your child to other people and add “____ has autism”, you are giving the child with autism an excuse for their behaviors. Most therapists will tell you that children with autism are very intelligent. They will use that opportunity “_____has autism” to manipulate situations in their favor or do something they shouldn’t because they know that the adults around them (and even some children) will understand and allow the behavior. Secondly, when you introduce a child in this way you are defining this person by their deficit while ignoring any gifts, talents or interests they may have. Introduce your child or student with autism by their first name and leave it to the children to figure one another out.
Do take notice of your child or student’s preferred activities, food and favorite items. ABA therapists and BCBAs know the importance of finding out what motivates your child to comply with your requests or demands. Preference assessments are regularly conducted in ABA evaluations and during treatment sessions. If a child likes playing outside more than anything else, then it is very likely that the child will comply when asked to complete a task. Parents don’t have to do formal assessments. They usually know what their child prefers. Use those things that your child likes to motivate them to complete necessary tasks like homework or to listen the first time.
Don’t use physical force, restraint or punishment on your child or student. This never yields anything good. Physical force of any kind only serves to scare, frustrate or anger a child with autism. There is nothing about physical force that would be useful in teaching a child with autism about appropriate behavior. The use of physical force is inappropriate on its own. You cannot teach appropriate behavior with inappropriate behavior. It just doesn’t make sense.
Do introduce your child or student to new ideas, environments and people. Children with autism can be very inflexible when it comes to breaking routine or trying something new. This includes new friends, new places or new activities. It is good to introduce new things in small doses to see how your child responds. If they find something boring, aversive or difficult you can try something else. Children with autism tend to stick with the routine and they typically do not seek new opportunities on their own. Most children with autism need to be encouraged by others to venture out of their comfort zone.
Don’t force your child or student with autism to be somewhere or participate in an event or activity that is causing them stress. If most of us without autism can make choices based on our likes and dislikes, it stands to reason that those who do have autism should have the same opportunity. Forcing a child with autism to participate in something that they despise is punishment to them. Also, keep in mind that they might have a very good reason for not preferring something. Sights, sounds, smells, temperature, or the number of people in one place could cause a lot of anxiety for someone with autism.
Do advocate on your child or student’s behalf if their needs are not being met or if they are not being included in activities with peers. Don’t let your child sit on the sidelines. Ask coaches or teachers to allow them to participate if you see them sitting alone or ignored for too long. Being a strong advocate is important. Most of the programs for children with disabilities exist because someone decided to advocate for these things. You are the voice for children who have difficulty speaking up and asking for what they need.
Don’t restrict your child or student’s social activities to groups of children with autism or disabilities. Children with autism need variety in their lives just as the rest of us do. Expose your children to neurologically typical peers, younger and older children, elderly people, different cultures and environments. Take them to the zoo, the museum, the park, the hardware store or a musical. The more experiences a child with autism has the more likely they are to find their interests and this could be the key to communication or motivation to do well in school or at home.
Guiding Children with Autism Toward Cooperation
Do use positive reinforcement with everything that your child with autism does right. Use what they know and use what they love to encourage them to comply with requests at home and in school. ABA therapy focuses heavily on compliance. When the therapist leaves, make sure you continue to guide the child the same way that the therapist does when they are not there.
Don’t neglect to participate in parent training via your ABA provider. ABA sessions are not like dropping your car off at a mechanic to pick them up later all “fixed” and ready to go. Children with autism need continual guidance at home, at school and in all of the various settings that they are exposed to. The most successful outcomes are always those children who have a supportive network of family, friends, teachers, coaches, tutors and social groups. The more exposure your child has to various people and settings, the more these children will be required to communicate.
Helping Children with Autism with Communication
Do work cooperatively and communicate continuously with all of the professionals on your “team”. There will be positive reinforcement during ABA sessions, speech therapy and at school. It is best to have a team that works together on behalf of a child with autism. Teachers at school should be informed of what the child is working on at home with ABA therapists and parents. Grandparents, aunts, uncles, older siblings and friends can even be helpful if they are willing to play along with the way ABA works.
Don’t try to manage everything on your own. We advocate for children with autism and we are here to advocate for you and your family. You will access a network of team players for all encompassing supportive care at Circle Care Services. Call us and ask your questions. We have answers and support for you and your child. Keep these do’s and don’ts in mind as you progress through autism treatment with your child. Reach out for help with your child.