Upon receiving an autism diagnosis, families face real challenges in providing proper care and support for their children. Parents and family members of autistic children need to be equipped with the proper knowledge to handle these challenges with grace and love.
There are many resources available for these families, especially in an age where academic-grade advice is ready at the click of a mouse. Still, it can be difficult to suss out what is useful. Parents and family members may find themselves wondering what information is applicable to them, what advice they should prioritize, and what’s more troublesome than helpful.
Families should consult with experts, but also trust what they know about their loved one. The more rich and diverse information they have at their disposal, the better prepared they are to embark on a journey full of trials, tribulation and even joy.
It’s been said that raising a child with autism is more like a marathon than a sprint — you need the right amount of training, fuel and motivation to go the distance.
1. Not all autism is the same
There’s a saying that is applicable here: “If you’ve met one person with autism, you’ve met one person with autism.” Basically, anecdotal evidence based on others won’t take you far in terms of expectations or reality. Autistic children like all others are unique, and no book or website can discover their quirks or know exactly what they respond to and how.
This is especially important in the early stages, prior to an autism diagnosis. Some parents will disregard the possibility that their child has autism based on what they think they know about it, which may indeed be very little. Throwing your preconceived notions out the window opens you up to the individual issues your child may face, and the equally individualized care he or she may require.
2. You can be honest about your emotions
When faced with an autism diagnosis, families may feel a variety of emotions, with frustration, anger, fear and sadness chief among them. It’s important to process these feelings and not feel guilty about having them. As clinical psychologist Robert A. Naseef has said, “you don’t have to kid yourself about how hard it is.”
These emotions will continue as your child grows, and suppressing them is not helpful to you or your child and other family members. Yes, you should attempt to be emotionally strong, but you can (and should) still be emotional when the situation calls. Being honest about your feelings will help forge a closer relationship with your child, who may have trouble reading and expressing emotions for his or herself.
3. Early intervention is key
Though this initial wave of negative emotions may be unavoidable, parents’ moods tend to brighten after diagnosis — now that they know what’s wrong, their child can get the help he or she needs. The resulting hopefulness is a relief for many, as diagnosis is the first step to proper and immediate care.
Time is truly of the essence in autism care. Early intervention programs provide children with instructions and improve the core behavioral symptoms before they worsen. Families should seek out experts that help provide a proper external structure for their child, and build a care team to guide them along the way. Specialists like developmental pediatricians, child psychiatrists, speech-language pathologists, occupational therapists, early intervention therapists and ABA(Applied Behavior Analysis) therapists can intervene early for key guidance on behavior and development.
4. Expenses can be high
Quality care does not come without cost, and families are frequently blindsided by the out of pocket sums required. A 2007 study found that families paid $30,000-$100,000 a year for private specialized behavioral and other therapies. Families should be sure to check with their health insurance carriers to see what services are covered, as many early intervention and assessment services are now required to be covered under health insurance plans. This may depend on the state where you live. Many state and local governments may also offer paid programs to support your child, some are offered at no cost while others may be on a sliding scale.
Also, be proactive — waitlists for specialists such as BCBAs and pediatricians can be quite long.
Luckily, there are free public special education programs available from an early age onward, you can also benefit greatly from hiring a financial planning consultant that specializes in special needs planning.
5. Your child has both strengths and weaknesses
Viewing autism in a negative light, as a disability only, is not the most productive way to live with, to teach and love your child. Like most people, kids with autism have strengths and weaknesses that need tending to. Often, autistic individuals have very specific interests and skills — encourage these, yes, but be sure to help them strengthen their weak areas as well.
On the same token, this means finding a balance between low expectations and realistic expectations. Autistic individuals are far from doomed: many grow up to have full happy lives with full time jobs, a home and families depending on their level of functionality. Don’t sell your loved one short — there is a bright future out there tailor-made for them. It’s your job to help them reach their potential, whatever it may be.
6. Other relationships are still important
One of the difficulties of caring for an autistic child is that it can strain other relationships. With the time and resources poured into a special needs child, other children can feel neglected and confused. Similarly, parents may make the mistake of putting their relationship with each other on the backburner.
Families should know that while their relationship with an autistic family member is incredibly important, it should not minimize the significance of other relationships. Parents may want to set aside special time with other siblings and with each other to emphasize this.
Look for agencies and organizations in your area that provide respite and in-home support services that at times may be available at no cost to you through your local government.
7. You are not alone
Lastly, families caring for and supporting children with autism may sometimes feel isolated by their situation. But not only are there countless resources such as peer groups and counseling they can turn to — there are many other people out there in the same position as well.
Having a strong and close knit network of family and friends can make all the difference. In addition, there are local (or online) support groups that can be found and joined easily. Through these, other parents can share their own challenges and successes, motivating families to keep their own marathon steady and spirited. These vital connections can boost perseverance and morale to keep you on a positive track.
Featured image: Kerry Sanders via Flickr