Our conversation on Autism continues! Today author Contessa Louise Cooper, an autistic mom veteran if you will, shares the signs and what you can expect once you get a diagnosis.
Thanks for sharing Contessa.
My son will be 27 this year, meaning 27 years of being an advocate, fighter, supporter for an autistic individual. Our life is pretty smooth right now. No major bumps, unless you recently count spending five days in the hospital with a severe MRSA infection, not autism-related. Most of the meltdowns, appointments, and therapies are history for us. He spends his days left independently to cook, clean and other activities. That makes him happy and so it makes me happy.
I wrote a book, “Mad at the World: How to Move On And Find Peace When You Are A Special Needs Parent,” a resource to those who need it. My friends are special educators, social workers, doctors and other advocates who are old pros at this autism thing. We stand ready to come to the aid of any parent who needs assistance navigating this world.
The Signs of Autism
Some parents seemed to know that their child was always “quirky.” They didn’t act like the other children in the room. They did their own things, lived in their own world. Other parents can describe the exact moment when their child’s personality changed.
What do you do if you suspect your child has autism? According to Autism Speaks, these are signs that your child may be at risk for an autism spectrum disorder: If your child exhibits any of the following, please don’t delay in asking your pediatrician or family doctor for an evaluation:
- No big smiles or other warm, joyful expressions by six months, or thereafter;
- No exchange of sounds, smiles or other facial expressions by nine months;
- No babbling by 12 months;
- No exchange of gestures such as pointing, showing, reaching or waving by12 months;
- No words by 16 months;
- No meaningful, two-word phrases (not including imitating or repeating) by 24 months;
- or, any loss of speech, babbling or social skills at any age.
Please don’t delay in speaking to your pediatrician if you notice any of these signs. From the moment you’re aware of an autistic diagnosis, you may face challenges that are different from anyone you know. According to a study published by the American Academy of Pediatrics, mothers of children with autism spectrum frequently rated their mental health status as “poor” or “fair.” There may be times of high stress, depression, grief and overwhelm from therapy appointments, behavioral issues, feeling inadequate, or realizing your life is different than you imagined. These feelings can to sleep deprivation, mental fatigue, memory impairment, a lowered immune system, or all of the above, unfortunately.
Raising a child with autism can also have a financial impact on families. Most private insurance companies don’t cover all expenses for specialists, therapies, food and other items your child may suddenly need. Often, there is a decrease in income because it may become difficult for both parents to work full-time.
Autism and Family Life
Having a child with autism can also impact family life and/or marriage. Couples may find it difficult to attend social gatherings, spend time alone, or have differing opinions on how to raise their child. These differences may result in divorce, or the child living in a single-parent household. Autism can also affect other siblings in the home. They can feel the same emotionally and physically, but unable to express their need for help. This may potentially develop into behavioral problems that show up at school, or outside the home.
Fortunately, there are more resources now than ever before. Your friends and family want to help you but don’t know how. Spend time with them and show them how they can help you. There are online and offline support groups available for your family. Try contacting your child’s school, or enlisting the aid of a child advocate, Facebook Groups or “googling.” Lastly, therapy or counseling can help your family deal with new stress or communicative issues, and provide additional resources, if needed.
Your family has no idea what they are doing, let alone how to appropriately react. They may know someone who knows someone who has autism, or they only know what they have seen on television. They may even say inconsiderate or hurtful things. They might do opposite as you’ve instructed them. They may decide to distance themselves from you and your family. You will be hurt and frustrated. My advice is to adjust your expectations and forgive them. One day, they may finally come around and then, you can include them in your support system.
Be Your Child’s Advocate
Having a child on the autism spectrum can involve many types of appointments with different health professionals over time. Some of the professionals on your child’s team may consist of doctors, mental health professionals, speech pathologists, care or resource managers, teachers or advocates, etc. However, you are the number one advocate for your child. Be attentive or informed (both, if possible) about your child’s need and available treatment options. Be prepared for all professional interactions. They are more willing to work with you in collaborating for the best care of your child. Keep detailed notes and records for easy reference. Just because they’re professionals doesn’t mean they are always right. Ask questions if something doesn’t seem right. Don’t be afraid to act independently, if necessary.
One of the best things I did for my son was to develop a routine. Routines create stability in a world that can seem overwhelming to your child with autism. Having a clear routine at school and home can help your child engage more in daily activities and prevent behavioral triggers. Meltdowns are not temper tantrums, although they may appear that way.
Meltdowns can happen to children and adults on the spectrum. The most common cause of a meltdown are anxiety, being overwhelmed or sensory overload. Sometimes, you can intervene before a full meltdown occurs. At other times, your child may just explode. While some children with autism may yell or stamp, others may run, commit self-abuse, cry, or scream This can be stressful, embarrassing and dangerous for everyone. Some meltdowns last for minutes, and others, hours. Try to remain calm, ensure the safety of your child, and relocate to a quiet area until it is over.
Above all else, remember that autism is a spectrum disorder. No two individuals are like. Learn your child. You will try many things. You will fail sometimes, too, which doesn’t make you a failure. That makes you an autism parent.
Contessa Louise Cooper