This information is meant to give purposeful direction to parents in the those of anxiety and remorse when they receive the initial diagnosis of Autism Spectrum Disorder (PDD-NOS, PDD, Aspergers/Autism) or before a diagnosis, when there is suspicion in the mind of parents or teachers.
These suggestions are in no way to represent or take the place of medical advice.
Your child has autism – what to do next?
Children with Autism Spectrum Disorder or ASD need support and services as they grow. In 2012, about one out of 68 children or 1.5 percent of the child population in the United States were identified with ASD, as per data from the Center for Disease Control and Prevention. The condition is a developmental disability that affects behavior, verbal and nonverbal communication and social interaction. It affects people in various ways and can be mild or severe.
For now, there is no known medicine or surgery that can cure ASD. It will most likely stay with your family for a long time. With that, make sure the diagnosis is true and if it is, you can start to manage it. There are medical groups that advocate for early intervention to help the child achieve maximum progress or some physicians gather themselves to help evaluate the best approach to the child. Have your child see a neurologist interested in autism or a developmental pediatrician.
Autism can be difficult to come to terms with and can be overwhelming when it comes to your own family. Any parent may be coping with something he or she has little knowledge about. Many parents of autistic children seldom receive guidance on what to do next in the daunting scenario of moving on with autism.
A diagnosis of autism is life-changing. You will surely feel fear, distress, denial and panic at first. Some feel unsure and do not know what to do next. It can really be difficult and depressing.
“Some parents do better by diving into research and looking for ways to help their child, but I’ve found that most need to grieve for what they thought was their child’s future,” Dr. Pamela Compart of Autism Research Institute said. “It’s not that they can’t help their child have that future, but the journey will be different.”
Nevertheless, you will eventually realize that autism is not a scary thing. Hence, there is no need to let it intimidate you. Learn more about it. Read and ask before jumping to conclusions. That sweet child you love is still the same person; and do not forget you are his or her parent, primary support and toughest advocate. Hence, lead your child to live a normal life as much as possible. Just like other children.
When your child is diagnosed with autism, you can start to better understand his needs, give him the right support and help him maximize his potential. It is not an overnight process though and it does not involve you as the parent alone. The treatment of ASD is a group approach with the parents at the helm.
First, you need to look after yourself. It will take time to cope with autism in your day-to-day life. You may feel frustrated or annoyed and that is normal and tolerable. Take time to recharge yourself and relax. Do wash up, walk the dog and relieve yourself from the guilt because you are not at fault.
Learn what you can do and where you can find help. Be aware that there are certain activities beneficial for children with autism and make sure to have your child involved with those. Furthermore, learn about some terminologies, such as the following:
- Early Intervention (EI)
- Free Appropriate Public Education (FAPE)
- Individualized Education Program (IEP)
- Individuals with Disabilities Education Act (DEA)
- Least Restrictive Environment (LRE)
Telling your child
Do you need to tell your child about his diagnosis? This thing really depends on you. You need to decide whether you should or not. Some parents have told their kids when the latter are already old enough to comprehend it. Some people do that when their kid is already of primary school age, or a bit older.
Children with autism will eventually become aware that they are different and will start to ask questions. You may ask advice from a psychologist or specialist of your kid’s school. They may be able to give you advice about what approach to apply in telling your child. Another good point is asking someone from your family, ideally one who is closest to your child and get that person involved.
Get a good timing, that is, when you and your child are both in a comfortable and calm mood, as well as in a comfortable place. Make sure there will be no interruption to give the child enough time to think and ask questions.
Some parents start their talk about autism through differences. For instance, talk about the weaknesses and strengths of all family members. Tell your child what he finds difficult and what he is good at, and that all these have a particular pattern.
Emphasize that being autistic does not mean they are sick and dying. You can help your child overcome the difficulties he is dealing with. Be open for some questions. Set up other means of communication in case your child finds it uncomfortable to ask questions face to face. An SMS, email, diary or question box can be where he can channel his questions to you.
The risk of not telling children that they have autism is they may think there is something wrong with them. Since they think they are different from the others, they can develop depression and affect their health. On the other hand, becoming aware of their condition may help them better understand themselves and that can please them.
A family with the presence of autism need to know the effect of the diagnosis and support of the autistic child, both to parents and the child’s siblings. The support for the autistic child can come from the people in his or her surroundings.
As for your other children, do not let autism steal them. A child with autism needs more care. Tell your other kids that they are important to you and their sibling needs them.
Teaching autism to your other children can help them understand about the condition so that they will be able to give extra care and support to their sibling and will not feel jealous seeing you do the same. Take more time to talk to your children and listen to them pouring out their concerns and worries. Your world does not need to revolve around the child with autism only. Your other children need you just the same.
School and community
Outside of your household, you can inform the school about your child’s condition so they will be able to give extra help. Local authorities can be informed as well since it is part of their duty to provide children in need with services. You can discuss with them your child’s condition as they may be able to help you assess your child’s needs.
You can talk with other parents who are in a similar situation and learn from them. Befriend other parents whose children are with autism. You will likely meet them in waiting rooms of your kid’s therapists.
For your child, meeting other children with autism may be beneficial. However, you need to explain to him that even autistic people are different from each other.
There are government or private programs for children and parents that educate people about ASD and its patient’s behavior. They likewise build confidence in parents of children with autism which they can apply in communicating and interacting with the child. Nowadays, there are several online autism-pertinent information that can serve as guidance about health, behavior, holidays, communication and other life and home aspects.
You can join a support group as well. When you are with family and friends, make sure to talk about topics other than autism. You will meet different kinds of people among your circle in your journey. Some of them can give beneficial information, but others can just add up to your challenges.
There are helplines that offer confidential autism-related information, support and advice. They can likewise point those who need help towards other sources of support and help in their own locality.
When autism is in your family, the more you need to start financial planning early. Sadly, the condition has caused divorce or separation of couples which should not be the case but it happened anyway. Hence, it is important to save money. If you care for your child with autism full time, make sure you and your spouse compensate you like you would a caregiver. Money is important for every family. Moreso, when there is a condition that can be as challenging as autism. You need the money basically for your retirement, or during emergency and most especially, if divorce happens.
Do not let autism steal the joy, fun and humor in your family. The condition does not suck all life’s fun. Maintain these because all children, with or without autism love to enjoy life. Never let the condition deprive your family of laughter, hope, dreams, motivation and faith. This is important to note because autism is a thief that robs childhood and a lot more. Do not let it do that to your family.
1. Immediately call an Information and Referral consultant. They can give you information and names of parents willing to mentor and help other parents with suspicions or new diagnoses.
2. Talk to more than one parent to ensure that you get all the unbiased information. Different therapies and interventions work for different children and it is your job to investigate them all thoroughly so you can make the best decision for your child.
3. Call your county’s Special Education office and ask to speak to an eligiblity coordinator. Let them know you suspect your child has delays or possibly autism and ask for an evaluation. They will provide one FREE. If your child is under 2 years old, the school system may direct you to the PIE program, who will provide the free evaluation.
4.To begin learning about the special education law and your child’s rights visit: http://www.edlaw.net
5. Investigate options that are available to help your child learn. Learn the benefits and differences in ABA / TEACCH / Miller Method / Higashi Method / Floortime / PECS / Social Stories. Web sites to get you started include the following.
http://trainland.tripod.com/pecs.htm non verbal communication
6. Research biomedical interventions for children with autism.
http://www.safeminds.org….Sensible Action For Ending Mercury-Induced Neurological Disorders
urocholine/ bethanechol/Vit.A therapy
Chelation of Mercury for Autism
7. Research Biomedical Testing done by those with experience.
http://www.greatplainslaboratory.com Lenexa , Kansas
http://www.gsdl.com Asheville, North Carolina
8. Find a DAN! (DEFEAT AUTISM NOW! ) Doctor and make an appointment while you are doing your homework. It will seem like forever before you might be able to get in to see the
doctor for the first time, but while you are waiting to get in to see the doctor, you can be learning about the disorder. This way you are not wasting time by learning about the disorder and THEN waiting to get in and see the doctor. http://www.autism.com/ari/danlist.html
9. Give serious thought to Dietary Interventions. Learn what you can about them. Make sure that you are working in conjunction with a licensed nutritionist or your child’s pediatrician if you aren’t yet working with a DAN ! doctor to make sure that your child’s nutritional needs are being met.
http://www.gfcfdiet.com – Gluten Free/Casein Free Diet
http://www.newdiets.com – GF/CF Recipes
Understanding and Implementing the GF/CF Diet http://www.autismndi.com – Autism Network for Dietary Intervention
9. Attend the ASA-NV meetings and trainings in your area. Most trainings are held in Loudoun, Fairfax, and Arlington Counties on the 2nd Thursday of each month. The general meeting is held at McLean Bible Church on the 4th Thursday of each month. All are scheduled from 7-9 pm. Here you can meet local parents and professionals.
And you can visit: http://www.autism-info.com or http://www.unc.edu/~cory/autism-info/
10. Read some introductory books on autism. These are available through the ASA-NV lending library (contact Lynne Ryan at 703-495-8444 for titles)
11. There is active research on a suggested link between the MMR vaccine and
some forms of Autism:
12. Locate and talk to parents who have done specific treatments and therapies. ASA-NV has an egroup that you can join through our website at www.asanv.org. Parents and professionals discuss many treatment options via the egroup and messageboard also maintained on the
13. Remember that as parents of a child with autism, you need time to understand and accept this diagnosis. There is pain and grief that you may have to deal with during this time.
Find support from other parents and from your family. Do not try to do this alone.
This is another post on autism awareness brought to you by ASANV. Together we can conquer autism.