How do you cope with an autism diagnosis?

Question

I've noticed some troubling red flags displayed by my toddler son and fear he may have autism. I'm not jumping to conclusions yet and I made an appointment to see a pediatric psychologist to see if that's true. The waiting now is killing me. I'm wondering how I can deal with all of my emotions about this. I'm terrified of the diagnosis of autism. However, I know that if he does have autism, an early intervention and treatment is critical. When I first saw a list of autism symptoms, I nearly threw up because so many of them described my son. How does a parent cope with this?

Answer 1

No parent wants to hear any diagnosis that will have a signifigant impact on their child's life. Autism can be particularly scarey. While the frequency grows, many people still don't understand it, thinking that all autistic people are like Dustin Hoffman's character in Rain Man. Parents do know however that autism has no "cure" which means this is something that will have an impact no only on the child's entire life, but on the dreams and hopes the parent's had for both the child and for thier own lives. It is very, very overwhelming.

That being said, the first thing you do is cry. There is no shame in crying. The image that you have had of your child..both the child as he is now and the dreams (no matter how far fetched then may be) of that child in the future..have been dramatically changed. You need to grieve that loss. Give yourself time to work through that feeling and put it into perspective. It will never fully go away... even though you will love your child just as much as ever, will still have hopes and dreams for them..but it will become a bittersweet moment, much like the feeling you get over the lost chance with the boy in high school.

Next, surround yourself with people you know, love and trust. These are the people you will count on in the future. These are the people who will be there to tell that you are a good mother, that you did not cause this and that you are doing everything you possibly can for your child. These are the people you will bounce ideas off of, that you will ask to help you find services or to give you much needed breaks. And once you have these people, make use of them. Autism can be tough on marriages. You and your husband must make time for the two of you to be a couple, not just the parents of an autistic child and your support group is going to be key.

Now you can start gathering some information. The internet provides more information than most people realize. I always advise parents with a new diagnosis to stick to sites from nationally recognized groups such as ARC, National Autism Society and Cure Autism Now. These sites provide strong, basic knowledge about autism as well as links to support groups and services in your area. For now, you may want to stay away from sites built and dedicated to the family of one child or designed to be forums or message boards. While you may eventually find these sites great places fo practical suggestions on daily life with a special needs child, in the beginning the postings that will stand out most will be the ones that tell about the most extreme problems, the worst case scenarios, the failure of the school systems. Yes, all of this can occur, but for right now you need to get information that will help you understand how much your child can do and achieve, not how hard it can be to get there.

Finally, consider finding a therapist to help you during this initial period. There will be a lot of challanges in the near future. Your husband may have a harder time accepting the news or be unavialable because of professional obligations. You may feel guilt and confusion. All of this is normal, but it can help to have an objective listner there to support YOU as you start to adapt to this change.

Know that even after all of this, there will still be days that make you wonder "Why us?" or wish for a more normal life. That is all perfectly normal. You will cry, be angry, be scared over and over, but you will quickly find out you are not alone. There are millions of families with autistic children. While it is not the life we dreamed of living when our child entered the world, we quickly realize it is the life we were meant to live. We can't imagine our lives being any different than they are and most of us would not really want them to be. Our kids are loving, sensitive, funny, challanging, gifted and unique. They help us see the wonder in the world, force us to look at things from new perspectives and find new solutions to old problems. Your life will be forever changed...and you will wonder how you manged your old life.

Please feel free to contact me if you need someone to talk to.

Mom of 10 yr old with moderat autism

Answer 2

You will grieve-every parent does. You had planned for and had a vision of what your child would become. That child is not going to come into being. Instead, you have a different child than you had planned for. There are no instructions on how to raise this child and there's fear because there is so much uncertainty. What's important is getting over the grieving as quickly as possible. It is not healthy for you or your child to dwell on things you cannot change.

Your child has not changed-he's always been who he's been, only now you understand why he has difficulties in some areas. Now you can get him the help and services he needs. His childhood will be anything but typical and you will discover a creative resivior within yourself you never knew you had. As your child grows, you will grow because you will learn about life from a totally different perspective.

Trust me, it is not all negative. There's so much joy to be found if you look for it. Many organizations put forth an image of autism being this unimaginable hell. I'm at a loss as to why they do this as it does nothing to help the autistics themselves, it only further propogates a false stereotype. It only adds to the stigma and that's probably why you're terrified of the diagnosis.

If your child is autistic, he has a developmental disability. This means he will develop on his own schedule and it won't mirror the development of typical children. Toileting may take a while, talking may take a while, reading and focus may take a while. Adding pressure to his development by trying to force something to happen will end in failure. Instead, nurture the abilities your child does have. Give your child a sense of purpose and self worth. This will pay dividends you couldn't imagine.

It takes extreme patience but you're in for a journey many people will never know. Make the best of it and you will find what seems now to be impossible.

Answer 3

The most important thing to remember is that this little guy is still your son regardless of whatever 'label' he winds up with.
The second thing you have to do, is to keep telling yourself (because it's true), that your initial feelings of shock, despair. helplessness, grief- whatever- will fade-eventually to the point where you will barely remember them. Please know that I am not attempting to trivialize your feelings and emotions- I would never do that to another mom in the ranks. I will tell you three resources that have been invalueable to me over the last 20 (oh my gosh- it's gone by SO fast!) years. The first is :The Autism Society of America
www.autism-society.org -lots of resources, and they can refer you to a parent support group in your area. I would like to interject here that parent support groups are great. You will find NO better resources than other parents- they have all 'been there, done that'. There are also two publishing companies that publish special needs books. They are: Woodbine House
www.woodbinehouse.com
and Brooke's Publishing
www.brookespublishing.com
They have the very latest books, and that's what you want.
Once you get back on the ground- when the initial emotions subside, you will want to educate yourself on everything about Autism. Learn what your rights are in regards to your son's education, what therapies you should be seeking, information about the physical and mental ramifications an Autism diagnosis involves, what alternative treatments are out there, and on and on and on. Just remember- knowledge is power. Oh, and a mantra that has always worked for me, as I have raised my son with Autism and my daughter with Down Syndrome- the whole educational aspect can be a war- you need to choose your battles carefully. This will make more sense as your son gets older. I so hope I haven't discouraged you. That is not my intent. All these things having been said, then, I will tell you with all my heart that raising my children has made me a much better, kinder, loving, understanding, tolerant, and definitely more patient person. Both my kids are warm, loving, smart and funny- they make me laugh every single day. And when all is said and done, that's a pretty neat thing. God Bless you and your family. My thoughts are with you.

Answer 4

My son is 3 and a nonverbal autist. He was diagnosed a little before he was 2. That was very fortunate as early intervention is the key.

My husband went through the whole grief process: denial, anger, bargaining and finally acceptance. I immediately went into "warrior mom" mode. I researched and read and became very involved with his treatment. To the point that I now work for the school district that educates him. I did grieve for awhile. It is important as the parent you do this. It is ok to mourn for the child you thought you had and envisioned. BUT do not stay in that frame of mind long because autism or no autism, he is your child and a blessing.

On the postive side here are some things our son has given our family (we have a total of 4 children):
*patience (couldn't we all use more of that?)
*unconditional love
*acceptance of all disabilities
*togetherness because we all work with him
*civic mindedness-we educate our schools and small community about autism
*responsibility for ourselves (because mom can't do it all!)

And these are just a few. I thank God everyday it is not cancer or some other incurable disease. I thank God I have been blessed and entrusted with this extraordinary little boy. Keep a gratitude list to refer to when the going gets tough and join a support group. They are all over the world.

Best wishes!

Answer 5

It's good that you are getting your child evaluated early so that IF there is a diagnosis of autism or another developmental delay, you can do early intervention and treatment.

The thing to remember with the list of symptons is a matter of degree so your kid could display some of the signs but it still be a part of typical development. Or caused by something else.

If your child does receive the label of autism or any developmental delay it will be difficult for you emotionally. I would encourage you to seek out local support groups for parents of children with autism AND to pursue agressive and intensive intervention, even though that may be exhausting, because the early it is dealt with the better the outcome for your child.

Answer 6

I also have a son who has autism. When he was younger he was also severe ADHD. I had to place him on medication when he was only 4 years old. He eventually grew out of the ADHD to the point that he did not need medication anymore. Talk to your child psychiatrist about giving him a low dose of medication to help your child control his anger. The anger part is the most difficult to deal with because some kids can turn violent. Your son is high functioning and with the right support services will be able to learn these important skills. Trying to treat the Bi Poler is even more difficult. He should be on medications to control his mood swings and if the medications are not helping the Psychiatrist needs to find out what will . Behavioral therapy would also be good for him. Anti-psychotic medications do not work the same way as it does in other people with different mental health conditions, he should not just be taking those kind of medications without anything else. Their are way too many side effects on that type of medication, and i would be very hesitant in allowing any DR. to put him on some of those powerful drugs. See if you can get him into therapy too, he can learn how to deal with his anger and talk to a professional , and possibly family therapy would help all of you to cope. Since you have depression you have to take care of yourself too. It is so hard to have a disabled child with so many things going on, but it can be managed , please get the right services for your son and yourself, you need support and should not have to do this by yourself.

Answer 7

My child has Autism and related communication difficulties of Apraxia and Auditory Processing challenges. He first received a diagnosis of PDD-NOS Pervasive Developmental Disorder- Not Otherwise Specified because he was young and didn't completely fit the criteria for a diagnosis of Autism. Although he has continued to be social he is primarily non-verbal and has many difficulties including fine motor skills that are not the level of his same age peers. His diagnosos is now Autism with a secondary diagnosis of Communication Disorder. It is truthfully an emotional journey if your child receives a diagnosis on the Autism Spectrum from PDD-NOS, Aspergers, to Autism. The bad news/good news is that you are not alone. Autism Speaks www.autismspeaks.org states that every 20 minues a child is diagnosed with Autism! The most helpful thing to do is connect with other families and state and national organizations that can point you toward the many intervention and treatment options available. ABA Applied Behavior Analysis is among the top methods for helping children on the Spectrum learn to learn and connect with their world. You can learn to be a therapist for your child and help develop a bond with them through the implementation of a home ABA program. Behavioral Intervention for Young Children with Autism is an excellent resource to begin learning about ABA. Additional treatments that we believe in are a special diet GFCF Gluten Free/Casein Free (plus we also omit yeast, soy, eggs, artifical sweeteners); and supplementation of vitamins and minerals helps greatly make up for malabsorption issues, and further biomedical treatments that get to the root of the symptoms. Use the ARI or Autism Research Institute website to locate a DAN doctor near you for guidance in the Defeat Autism Now treatment protocol.

Answer 8

My son is 4 and is Autistic. I was in your shoes about 2 1/2 years ago. I first noticed something wrong when he didn't say a first word. He just babbled and made sounds but no words. Then he was delayed on a lot of motor skills and potty training wasn't happening. I took him to pediatrician and she suggested the notion of Autism. I went home and looked up the symptoms and same as you I cried and felt sick over it. I wondered why us? I had a good pregnancy and didn't drink or smoke or anything. We took our son to a Pediatric Neurologist and a psychologist. He was diagnosed and we started the Birth to three program and regular speech and occupational therapies. He is now in early childhood, speaking sentences with help and is doing well. It is ok to cry but intervention will help. Good luck and this will pass and you will learn to accept it and do the best you can.

Answer 9

I cried lots once we got the first diagnosis. Then I called our local autism society and got help. From there we got inot Early Intervention which was a godsend as we were already in speech therapy so we just added developmental and occupational. Then we went to 2 specialists the first told us our son was a behavioral case and we werent structured at all. The second confrimed hte high functioning autism diagnosis. He gave us info and counseling and listened to our fears. He helped me cope better than anyone.
The best piece of advice I got was he is still your son and the only difference between now and before you got the diagnosis was a label.

Answer 10

Well to start I'm fourteen, so I don't have any children :D

But my mum's friend had trouble conceiving so they had IVF and gave birth to a girl, later she discovered she was pregnant again, naurally, she was thrilled!

When she gave birth the nurses immediately noticed that there was something different about her son, he was diagnosed with Down's Syndrome. She seemed to cope well considering the shock and since my mum is a Special Needs Assistant working in a school for the severe and profound she offered her much guidance and support.

She was coping really well and was very enthuastic when it came to teaching him things, and was always pround to show off his new talents. She began to notice things, he loved to sing and dance so she taught him loads of Norweigian songs, though he couldn't pronounce words fully he always recognises the song and humms along.

Sorry if this hasn't seemed relevant so far, but last year he was diagnosed with autism, so you can imagine the blow that took, but she still is so proud of what he can do and has such a great connection with him.


Stay strong and focus on the positives, he's still your son, and he will always love you ~*~