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Help! My child is autistic!

Many parents seem very confused and concerned when they first hear that their child is autistic. They also feel a sense of loss, as they contemplate the fact that their child isn't normal. While I've never been a parent, I think I can give some insight as an adult autistic.

What about PDD/Asperger's?

Technically, PDD isn't a diagnosis - PDD-NOS is a diagnosis, while PDD is the entire category of Autistic Spectrum Disorders. Asperger's is part of that spectrum. Differences that apply to one part of the spectrum often apply to the other parts, as do therapies. So I consider all three to simply be "autism."

I feel so bad for my son...

You may need time and support as you grieve. But, remember, you aren't grieving for your child. He is the same child that he was yesterday, two days ago, and even years ago. He hasn't died. You may need to grieve for your loss - the loss of the "perfect" child you may have expected and even created in your mind. You lost that child when the reality of the situation was shown to you. Find someone who can understand this and comfort you. But don't grieve for your child. He needs to know he is valuable to the world and that he can make a difference in it, not that he has been inflicted by some horrible thing that destroyed his humanity!

How can I help him to speak?

Speaking isn't what is important - communication is. I did not speak until I was nearly five, then I spoke most of the time until fairly recently, and now I use a combination of speech and other methods of communication. There are times where I have to resort to other means, as I am in the minority of autistics who speak some, but not all, of the time (most autistic either never speak or always are able to speak). For example, I use other means of communication, such as a TDD (Telecommunications Device for the Deaf) and my state's deaf relay service with HCO (Hearing Carry-Over) to communicate on difficult phone calls - I find the call much less stressful if I don't have to worry about speaking. Other older autistics may use writing (the Internet can be wonderful!) or their country's common sign language. For younger autistics, there are some special forms of sign language and PECS (a "pictorial" communication system) that lets them understand the value of language. Autistics aren't born with the instinct to communicate - they don't always see the value of communication. Systems like sign language and PECS show an autistic that communication has value and will help them, which, in turn, encourages them to develop speech. But not all autistics will speak. It is still possible to enjoy the human experience without speech - many people in the deaf community enjoy their lives.

Even if speech develops, there will still be communications problems. My speech sounds strange to most people for many reasons. I don't use the right tone of voice, since I don't even hear the difference between differing tones of voice. I also can't hear the difference when words are pronounced with differing syllables stressed - so I'll stress the wrong ones. A lot of speech therapy when I was young has helped this - people can understand what I am saying today, but it is still not "normal." Besides for these differences in the actual mechanics of speech, there are also the problems I have communicating my desires and needs. It is very, very difficult for me to ask a simple question such as, "Can you turn down the TV?" I might be near melt-down, due in part to a loud TV, but I can't actually communicate a need that I have. This is why developing communication is so much more important then developing speech.

Is he going to be retarded?

It is possible to be very intelligent, yet also be autistic. There are autistics with IQs in the genius range. There are also autistics who are test as severely mentally retarded. Autism itself is very different than intelligence; the two are not directly related - it is possible for an autistic to have either high or low intelligence. It is also extremely difficult to assess the intelligence of autistics via tests. We often score worse then we "should" simply because of communication difficulties.

That said, it is also possible for someone with "low" intelligence to be of worth and to have worthwhile lives.

Will he ever marry someone?

This seems to be one of the first things parents want to know - will he be able to live the "normal" life - that is, will he be able to find a mate, marry her, and have kids? The answer is "maybe." Some autistics have done this. On the other hand, others - despite a desire to find someone - don't ever manage to actually find that person. Then there is a third group, which includes people like myself who have no desire to find a mate. It is possible to live alone, yet be happy. People should be left to find their happiness, even if what makes them happy wouldn't make someone else happy.

Will he ever go to a normal school?

Once again, the answer to this question is "maybe." I went to a "mainstream" school, although I spent up to half the day in special classes during my early years. Other autistics spent little, if any, time in special classes while yet others attended autistic or special schools. I think I would have been a much happier adult, with quite a few less mental issues to work through if I had attended school where I was valued by others, regardless of the type o school it was. Unfortunately my experience is not unique, and this is one area where parents do need to be involved.

Some autistic adults have said they enjoyed school, although they do seem to be in the minority. The big thing to realize is that it is more important that your child live up to his potential and enjoy his life then it is for him to be "normal." A good school will realize that intelligence and autism are not linked, and will give a quality education to an autistic student. You aren't limiting his potential by "failing" to mainstream him or by "failing" to give him "special" help - what is most important is that he be valued by others wherever he is!

What about a job?

Most autistics can not sustain a "normal" job. Trying to do so only frustrates and depresses them. The ones that are successful in employment, however, are almost universally employed in areas which are perseverative interests. For instance, I work with computers for a living. Computers have been an obsessive interest since I was 5. I learned to program at the same time I was learning to speak. Other autistics are successful in other careers which meet their interests. But it is very difficult for an autistic to remain in a career without the passion of an obsessive interest to drive them. Sooner or later, they will say something they shouldn't or get so depressed that they must leave. A favor you can do for your son is to help him learn about careers in fields that interest him. Then, put him in contact with mentors who work in those fields. But make sure that the field really does interest him! Don't push your dreams upon him, but help him to find his own dreams!

Will he always be autistic?

Yes. Autistics do not grow out of their autism. They can learn coping strategies, which are simply "social scripts" and other very exhausting methods to cope with the world around them. But, no matter how well practiced, these coping strategies are never natural, nor are they ever easy. In addition, they don't cover all the possible situations that a person will face. Even adult autistics who successfully employ coping strategies much of the day still need to let their autism "show through" their skilled acting. They are also much happier if they are allowed to be autistic around others. A happy person is much more likely to live up to his potential.

What about eye contact?

Looking in someone's eyes can be physically painful for some autistics. For others, such as myself, it is more of an issue of disorientation and the inability for me to concentrate on looking at you while also concentrating on the words you say. Looking at someone makes it more difficult for many autistics to hear or learn from what you say. If you want to know that an autistic child is listening to you, ask him to repeat back, using different words, what you just told him. (You want to use different words since some of us, like myself, can repeat back exactly what you said even when the words never actually got to our conscious mind) It is possible to live a fulfilling life without eye contact, even if the doctors and teachers try to persuade us otherwise! To this day, I can not look someone in the eye.

Therapy/Intervention

Read up on early intervention. Find out about sensory integration therapy, and look into whether or not it will help your son. But beware of snake oil! There are lots of people who would try to take advantage of you and sell you expensive, yet worthless, treatments, dietary supplements, vitamins, videos, drugs, training courses, chelation, seminars, retreats, etc. Sometimes some of these things help, but the rule is to stay away from anything which claims to be a miracle cure for autism!

One of the most helpful treatments is sensory integration therapy. Autistics see, touch, and hear the world differently then you do. A little help making sense of the confusing signals can help an autistic child greatly. Also, remember that "little" things may be "big" things for the child with regards to senses. When he has a meltdown, look around. Could it be the bright lights and the noise of the crowd that is causing his "illogical" meltdown? By helping him to handle those sensations, you can help him live in this confusing world.

Intensive Therapy

There are also many intensive therapies for autistic children, which are very invasive to the child. No child should be in therapy during every waking moment! In addition, any therapy which makes a child unhappy for more then a brief moment should be avoided. Childhood is meant to be a happy time.

First-person Perspective

Read the stories of autistic adults! You can find some of mine on this website, but there are many other different stories on the net. Visit mailing lists frequented by people with autism as well as with other parents. The net can be one of the best - and worst - resources available on autism, so use your discernment and wisdom. If you know an autistic adult, talk to him! Ask him questions. Most of us feel a strong connection with autistic children, and want to help parents to understand how their child feels. Some of my happiest memories are those where I've helped a parent understand their non-verbal autistic child. But, please, remember that we are different than your child and will sometimes be wrong, while other times we simply won't know why your child may be doing something or how to help your child.

YOU are the expert!

Above all, realize that you are the expert on your child. No doctor, autistic adult, writer, or teacher knows more about your child then you do. This is based on not only years of experience with your child, but also the intensive nature of that training. Teachers can't spend as much time with your child as you have. Thus, while these people may all be wonderful experts on the general field of autism, they are not experts on your unique child, with his unique expression of autism.

Take care of yourself!

Also remember to give yourself time by yourself, away from your child. One of the nicest gifts someone can give to an autistic parent is a night of child care (but, be warned - you might end up with a lot more respect for the parents then you expected to receive!). Your child needs you to be rested and able to spend quality time with him. You also need all your strength to fight for quality schooling and to stand against the people who will tell you that your child would have been normal if it wasn't for you "spoiling" or "babying" him.

A special caution about drugs

There is no autism drug. Do not subject your child to experimental or unproven drugs/vitamins (vitamins are also drugs!), just because a person (even many with impressive sounding credentials or heart-warming anecdotes) peddling them claims that they are "in the final stages of approval", "have a 100% success rate", or even "are all-natural" (so is Cocaine!). No child deserves to endure untested but dangerous experimentation. In addition, there are many recognized drugs for treating psychiatric conditions that have been shown to be dangerous and completely useless for autistics (yet, often, these drugs are prescribed off-label anyhow). Do your research before giving your child any drugs, psychiatric or otherwise. Drugs should never be given to treat any symptom that is a result of autism - they should only be given to treat other conditions an autistic child has.