Challenges of Raising An Autistic Child

Living with Autism

The challenges of raising an autistic child are many and varied just as the challenges of raising children in general. These can vary widely depending on the severity of the autism and other handicaps or medical conditions the child may have. What I will do in this article is highlight some of the challenges that are shared by most raising an autistic child.

Before I go on let me give you a little background. I have raised my great-nephew Aaron from age 6 and he is now 23, as a single parent the whole time. In addition to the Autism he has severe developmental delays as well being affected by fetal alcohol syndrome. The only preparation I had was the fact that I have worked with kids in varying situations and facilities from the time I was a child myself. I knew little about autism; what I did know was that Aaron needed someone to work with him and teach him..


Finding Adequate Support Services

One the first challenges I faced was finding adequate support and other resources, especially affordable ones. While much more research has been done and all kind of websites, books, therapies, visual aides have been produced since I got Aaron in 1998, much of it is out of reach for the typical family either because of the cost involved or the time demands of implementing the therapies. Getting help through the school and other agencies requires much patience, persistence and tenacity. In addition to this as the child gets older some types of help disappears completely. For example once Aaron turned 13, I was no longer eligible for child care assistance. At the time child care consumed over 30% of my budget. Of course this assumes that you can even find someone capable of caring for your child at all!.

Emotional Intensity

Another challenge that quickly surfaces is the sheer physical, mental and emotional intensity often involved in raising an autistic child. The child often requires near constant supervision, and depending on the sensory and medical issues the child may experience, constant adjustments in approach and environment is also required. An approach that worked yesterday may not work today. Situations that were not a problem this morning may cause a complete meltdown this afternoon. I found that things that were supposed to motivate good behavior sometimes resulted in the opposite occurring. Even skills learned in one settling totally disappeared when needed in a different setting, because for the autistic child any change in the learning environment can constitute a whole new situation.

Family and Friends

One challenge that may not seem like much on the surface, but trust me can add stress to an already stressful situation, is dealing with well meaning family, friends and others who unintentionally undermine your efforts by accepting behaviors that they would never accept from a normal child or allowing behavior you have asked them not to allow. If I had a dollar for everyone who told me I was too hard on Aaron I could take a nice vacation! Most did not understand that many autistic children can't make the hundreds of small decisions and differentiations we automatically make each day, so they have to be given one standard they can use in every situation. By nature this means that in some situations it will be a stricter standard than warranted. I finally dealt with such comments by asking the person what week did they want me to drop him off to their home. This always took care of their objections!

Maintaining Balance

Keeping the family life balanced and making sure the needs of all family members are met can become quite a chore as well, especially for those with either other children or other autistic children. It's unfortunately not uncommon for marriages to disintegrate due to the stresses within the family. It is very easy to allow the family to be centered around the needs of the autistic child to the exclusion of the needs of the rest of the family. It is important for the family to develop a support network to allow each family member a break and time to themselves. I quickly learned that some "me" time was not selfish but vital to me staying positive and upbeat.

Parting Words

Needless to say books have been written concerning this topic and I suspect that each parent of an autistic child could write their own. This article is just the tip of the iceberg, I hope it will at least shed some light on some of the dynamics involved in raising an autistic child and make you more sensitive to the potential needs of your friends or family members raising autistic children. Over the past 12 years I have learned that the key to managing all of these and other challenges is first managing myself and my responses. I found that as I maintained my composure I could maintain control of the situation. On the other hand when I failed to maintain my composure life was not pretty! As the main component of the child's environment and often the central person in the child's life, it is vital for the child's sense of safety and stability that parent remains consistent, loving, and reliable.


Comments 12 comments

AEvans profile image

AEvans 6 years ago from SomeWhere Out There

Taking on that responsibility and sharing it with others is an inspirational message to those who are or will experience it. I did not realize that raising an Autistic child could be so stressful and "me" time is needed. You were a blessing to your great nephew and guided him to become a great young man. To do that all alone is an accomplishment in itself and he is so lucky to have such a wonderful Uncle as you. I truly enjoy your writing and as you continue on your journey with HP may many doors be open to you and may you have wonderful success! I will be back to read more of your work and you are welcome to e-mail me when you publish another hub. I am looking forward to your words. :)


msburgman profile image

msburgman 6 years ago from Williston, Florida Author

Thank you for your gracious comments, and taking the time to read my Hub. Recently Aaron's younger brother joined us so now I get some practical experience in keeping our family life balanced. While he is not autistic he has special needs of his own. Between he and Aaron I figure I'm getting my post graduate education in caring for special needs children! It has been very educational already and I am still wondering how my parents coped with 8 kids!


AEvans profile image

AEvans 6 years ago from SomeWhere Out There

@msburgman I don't know how you do it! You could certainly provide insight into a world that many do not like to discuss. It takes someone very special to have the ability to deal with special needs. I have a nephew who is mentally handicapped. Although 18 is age is 10. When he visits us we love him to pieces and our son also understands his issues. It is painful when our nephew was picked on and bullied. But our sister taught him to ignore those people and hold his head high. I am looking forward to reading more hubs so do keep writing. :)


PaulaK profile image

PaulaK 6 years ago from Austin. Texas

You certainly are a hero in the parental world by taking in your nephew. Blessings to you and hope you are able to share your gained wisdom with others in similar places.


stephensaldana profile image

stephensaldana 6 years ago from Chicago

I applaud you @msburgman.. Caring for a child, even one with no disabilities, takes a lot of energy, patience, compassion, and sacrifice. I cannot imagine how exhausted you must be at the end of the day, but your nephew is so lucky to have you.. I hope you keep sharing your stories as there are inspirational to parents of all children..

-Stephen


msburgman 6 years ago

There is the old statement "He ain't heavy, he's my brother" and that certainly applies in my case. Having worked with kids for most of my life and having ran myself ragged ministering to others kids, when it became clear to me that my great-nephew needed more help than he was getting, had more potential than many saw in him,and being self employed at the time I was in the best position of any in the family in terms of the flexibility it would require to meet his needs, it would have been harder for me not to take him. It has been the most challenging task I have ever taken on but it has also been the most rewarding. Now Aaron can help around the house, including doing his laundry with minimal assistance, and in the yard, and when we moved to where we are now he and I did it all by ourselves. If you do the hard work in the early years the load is lighter in later years. When get a chance check out my hub I posted last night "Autism and the Power Of Choice". In it you will find one of my secrets to staying sane!


ladyt11 profile image

ladyt11 6 years ago

@msburgman, how honorable of you to love and care for your great nephew, he is truly blessed to have you! I have an autistic daughter and I recognize and have gone through a lot of the things that you talk about. Especially about having to be very persistent in the school system and getting help for the autistic child. Also I have experienced my daughter learning skills in one setting, totally disappearing when needed in another setting. I have had to quit my 9-5 because of the other medical conditions that she has including trigeminal neuralgia which is a severe facial pain disorder involving the trigeminal nerves in the head. I was called away from work countless times and not having a babysitter for her was very hard. I have been doing in-home daycare off and on to maintain an income. My daughter is growing and learning so much, she has a photographic memory and she loves to cook. I love her to pieces and I thank god for her life everyday. It is very hard sometimes but with god's grace and mercy we are making it. Thanks for this hub, it is awesome!


msburgman profile image

msburgman 6 years ago from Williston, Florida Author

Ladyt11, thank you for reading my hub and leaving a comment I often remind myself that diamonds are not produced in a comfortable easy environment! Those of us who are willing to go the distance and pay the price find jewels others were not able to see. Now we are in the cutting and polishing phase, bringing out to the world what was hidden but there waiting to be discovered. No doubt without God's grace and mercy I could not have made it this far either. With him we can do all things, and these precious diamonds in the rough are proof of it! Aaron can do his own laundry,vacuum, wash dishes, help clean in the house and the yard with minimal supervision. He is largely non verbal but even that is improving. I have always maintained that I need him as much as he needs me because I probably would have never learned as much about myself as I have raising Aaron!


jackqueline 5 years ago from U.K

Thanks for sharing this truly kind and selfless story. This is truly an indication of you inner soul and will mirror into your nephew. Your son has developed and will continue to do so and fully appreciate what you have done. I too are raising a son aged six now with autism.We are lucky there is more support today than in the days of raising your nephew. You are doing a great job and commend you. Keep up the good work and God bless you.


msburgman profile image

msburgman 5 years ago from Williston, Florida Author

Thank you Jackqueline. The support is the key to staying sane and keeping your sense of humor. I knew that it would be a challenge but it was one I could not turn away from. With the support and simple refusal to give up on him Aaron while still having major cognitive and speech deficits can do many things around the house and yard with minimal assistance, including laundry, dishes, vacuuming and sweeping. All who can look beyond the autism and see the person and be willing to do what it takes to draw the person out are to be commended. Kudos to you as well!


amandaadden profile image

amandaadden 5 years ago from unoted states

My son is 5 years old and has a developmental delay with his speech and social skills but is so so smart. It is very stressful at times and I wish there was something I could do to help him instead of sending him to a school or having someone else help him. As a mother all you want for your child is the best and deep in my heart I know the schools and speech teachers are going to help. I loved your story and you are an amazing person to give your love to someone who needs it.


msburgman profile image

msburgman 4 years ago from Williston, Florida Author

Thank you. Know that there is much you can do to help him since no matter what other interventions you provide for him, you are still the primary force in his life. The key is to use the daily routines and situations of life as learning opportunities and be the best advocate for him with the school, therapists, and agencies you deal with. To this day Aaron still progresses most when I work with him directly and consistently. Provide the best environment you can for him and build on his strengths. I admire anyone caring for a five year old; I recently kept my 5 year old great-great-nephew for a few weekends and lets just say my memory came back!

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