This guide is intended for parents of children diagnosed with the autism spectrum (including Asperger’s syndrome).
This article has been shared more than 120 times.
This guide is intended for parents of children diagnosed with the autism spectrum (including Asperger’s syndrome).
1. Take your time to sort your feelings.
The media coverage of autism is dominated by negative messages and images. This is the main reason why an autism diagnosis scares parents.
What many people don’t understand is that their child is exactly the same child that they were before the diagnosis.
The diagnosis can help parents (and those around them) to understand the child better and to support and promote them better.
It is not enough to read superficial descriptions of autism, you really have to understand autism.
Some parents go through a kind of grieving process when their child is diagnosed with autism – they grieve for a normal child who only existed in their imagination. If you need it, do it (and you may need help), but don’t burden your existing child with it. One has nothing to do with the other. Your child is good the way it is. And so that you can help him, you have to say goodbye to the fantasy child. Read more about it in Jim Sinclair’s article Don’t Mourn For Us .
And the negative (and wrong) pictures of autistic children who live in isolation in their own world, have no empathy, cannot feel affection, etc.? These images are based on a completely wrong understanding of autism. I would like to advise you to just ignore them. Le >
You have to deal actively and critically with these images. One book you shouldn’t read (not only because of that) is Steve Silberman’s "Ingenious Disorder: The Secret History of Autism and Why We Need People Who Think Different".
In it, Silberman describes how different theories of autism emerged (most of the time the scientists had no evil in mind), what misunderstandings and misconceptions they are based on, and how they were ultimately refuted.
Then when you read an article that shows autism distorted, you can express your thoughts about it in a comment or letter to the editor. By doing so, you are helping to make the world a little bit better for your autistic child and for the adult who will be. Autistic people need allies!
Some parents feel ashamed because their child is autistic and behaves inappropriately. This is one of the most harmful things you can do to yourself and your child. There is no reason to be ashamed: your child has a different neurology, nothing more, nothing less.
I know that autism can be a challenge – for the child and the whole family. But most of the problems you’ll encounter are caused by a lack of understanding and accessibility, not autism itself. This is especially true for children with no language delay.
2. Take your surroundings with you on this trip.
Your friends and family may not know how to respond to the diagnosis of autism. Other than platitudes, they may know nothing to say – and they don’t want to do or say anything wrong.
Be open with them. It can help to say: It’s okay to ask questions, but we may not know the answers ourselves.
Perhaps your friends are unsure whether you can and want to maintain the meetings and leisure activities with them. Don’t let the contact fall asleep. Maybe you tell them directly: You are welcome to continue inviting us, we will tell you if it doesn’t work.
Keep your surroundings up to date. After the diagnosis, everyone is unsure, but if you learn more about autism, your attitude will change.
Take your surroundings with you: keep your family and friends up to date. This can be done, for example, via status updates in private groups on Facebook, in blogs or through regular group emails (in the more public areas you should definitely pay attention to your child’s privacy).
You can tell your readers that it’s okay if they just read without commenting. This way, you will have less to explain if you meet them in person, and the new information you have found will not be unknown to them.
Hopefully this will result in you and your child being surrounded by people who understand and support you. (And maybe the well-meaning but actually offensive comments like I could never do what you do will decrease.)
3. Take your time to critically reflect information.
There is so much bad and wrong information about autism, especially pseudo-scientific rumors about an alleged cure. There is no such thing – and we don’t need it either! But there is also a lot of good information. And the more you understand, the more change your perspective and understanding of autism.
I have to mention Steve Silberman’s book Genius Disorder again because it can be of great help in critically reflecting on autism information.
Silberman shows in his book Ingenious Disorder why there is no autism epidemic, why autism is not caused by vaccines or environmental toxins, which autism theories have harmed autistic people and their families and which have helped to better understand and accept autistic people.
I highly recommend this book. It is a very good guide through the autism jungle, easy to read, well researched. Definitely read!
Otherwise, if you’re reading about autism, get used to asking critical questions:
- There are (good, solid) scientific studies on this?
- What do autistic people say about it? (These are the real experts.)
- (in the case of therapies etc.) you would do the same with a non-autistic child?
If someone wants to tell you that autism is caused by misdirected energies, vaccines, or the like, go for it – and better information.
4. Find out what autism means for your child
The brains and thinking processes of autistic people can be very different from those of non-autistic people. If you are not autistic yourself, it may take a while to recognize and understand these differences.
What looks like defiance or laziness to parents, for example, can be a problem with the executive functions: an autistic child may not refuse to clean up the room out of defiance, but because they cannot cope with such an extensive, multi-step task without help can.
In addition, one should never forget: autism is defined by a number of characteristics, but no autistic person is like the other. It’s not for nothing that the autism community says: If you’ve seen an autistic person, then you have a seen autistic person.
There is no scientifically proven therapy that makes a child less autistic. There are therapies and other forms of support that help autistic children cope with certain problems. It is therefore important to see the child as an individual with his or her individual difficulties and talents.
Here are a few points to look into:
Has autism diagnostics been examined to determine whether there are differences in perceptual processing? Most people on the autism spectrum have such differences. In diagnostics, this is usually not queried, or only very superficially, because it is not a diagnostic criterion for ICD criteria.
However, to understand how your child perceives their environment, it is important to recognize such differences and respond to them.
For example: The child has regular freakouts in the supermarket (or after). Perhaps it is flooded with too many stimuli and cannot react differently. Or the child sometimes appears to be hard of hearing, especially when many people are talking to each other at the same time or there is street noise in the background. Some children cannot hide these background noises and then do not understand much anymore. Keyword: Auditory processing disorder. This should also be clarified for children with speech delay.
Many autistic children are looking for (and need) certain forms of sensory stimuli, for example watching a gyroscope spinning, smelling or licking things, or jumping a trampoline (stimming).
An autistic brain processes stimuli differently than a non-autistic one. There is no right or Not correct. Most people can no longer have sensible entertainment when standing next to a dozing foghorn. This is not wrong, it is just that. With autistic people, the threshold is somewhere else.
Sometimes sensory integration therapy can be useful. It can help children (and their families) to deal with divergent perception processing. Whenever possible, you should try to make the environment more pleasant to the senses.
Even in situations where you are against a noise source or similar. nothing can be done, it is important that the child knows that his discomfort is recognized, that he is understood.
I would recommend clarifying whether and how the child’s perceptual processing differs – either by itself or by an occupational therapist who has experience with autistic children as well as with sensory integration.
Learn more about the learning styles of autistic people. Not all autistic children are math geniuses. Studies show that most no have above-average math skills.
And Temple Grandin announced that all autistic people think in pictures, but other people in the autism spectrum contradicted her: Donna Williams describes her learning style here – as a child she could see no meaning in pictures and learned through music and movement.
Learn more about learning styles here.
Other neurological differences
AD (H) S, poor reading and spelling, and other neurological differences are more common in autistic people than in the average population.
They can be overlooked and interpreted as laziness or lack of intelligence if autism is used as an apparent explanation for all child’s school weaknesses.
5. Find out what communication looks like for your child.
Everyone communicates. Children too, who don’t speak. But even autistic children who can speak fluently cannot always express everything. The latter are often overlooked as having difficulties communicating, and this may result in them being misunderstood.
And as for the children who do not speak or do not speak fluently: Maybe they understand everything that is said. You should always consider this option and treat it accordingly. In any case, you should treat them with the same respect as you treat talking, intelligent people.
Julia Bascom, an autistic activist, writes about parents who discover that their child is more capable than they thought:
They think the problem is that they treated their child as if they were cognitively impaired, and then it turned out that it wasn’t. But that’s not the problem. The problem is that they thought their child was cognitively impaired, so they didn’t treat it as a human.
Communication is very important. Everyone wants to be understood. But communication does not always have to mean spoken language.
Your goal should be to find the optimal communication strategy for your child (e.g. speaking, picture cards, typing or sign language) and not to prove to the world that a normal child is trapped in the real child in front of you.
6. Find out what can help your child achieve his goals.
What support, schools, therapies and what kind of environment does your child need? For example, is an inclusive school an option? Can you differentiate between helpful and harmful therapies? Do you know ways to support your child in everyday life at home and lifehacks that make life with autism easier?
7. Appreciate the atypical.
Everyone likes to talk about diversity and individuality, but when it matters, parents have an overwhelming need to make sure the child fits in .
Only with time you understand that fitting in is not nearly as important as being happy.
It makes no sense (and only creates stress) to measure autistic children against a neurotypical norm.
If your child doesn’t sleep much, you may need to adjust your rhythm. If your child only accepts certain foods, you may need to take their food with you. Perhaps the child suddenly cannot stand a certain environment and has to go. Remember that your child doesn’t do this to annoy you. It has no choice. Try to understand his autistic needs and what is really important and where you can be flexible.
8. Find autistic role models for your child.
If your child knows no other autistic children or adults, they may feel alone and isolated (or even inferior and broken). Don’t let that happen if you can prevent it. For example, your child can find good role models in books and films by and about autistic people. And of course (if possible) by meeting other autistic people!
9. Are there people in the family who have something in common with the child?
Some parents (or other relatives) determine after diagnosing their child that they themselves are on the autism spectrum. Others do not meet the criteria for a diagnosis from the autism spectrum, but have autistic traits.
Autism is (at least to a large extent) hereditary, so it’s not unlikely to have other family members with autism or autistic traits.
If the autistic child has siblings, care should be taken to see if they show autistic behaviors. Girls and women in the autism spectrum in particular are often overlooked – and as a result are left alone with their difficulties.
Having multiple people with autistic traits in the family can mean a greater understanding of one another. Conflicts can also arise if the needs are different: some people make (and like) noise, others are very sensitive to noise. It can be difficult to balance the different sensory needs of each family member.
10. Your child will learn throughout his life.
Unfortunately, many families stop teaching their children if they assume that an imaginary window of development has closed. The fact is that even as adults, autistic people continue to learn new skills throughout their lives, more than non-autistic people do.
The prerequisite for this is an environment in which this is possible.
So make sure that your child has an environment beyond puberty in which it can grow and develop.
11. Find out what your child really likes.
Appreciate your child’s interests. Don’t try to suffocate them. They can help build a stronger bond with your child.
Let your child have fun whenever possible. It is a child after all! Do not let other people take this enthusiasm in pathologizing terms such as special interest or island talent. If your child likes something and it doesn’t hurt anyone, then let it like it.
12. Plan your child’s future without you.
If your child does not have a life-threatening illness, there is no reason to assume that it will not survive you. And that’s why you have to plan his future – a future without you. Suppressing that doesn’t help anyone, and can make your child vulnerable later. This is especially true for children who foreseeably still need a significant amount of support as adults. If you deal with this now, you will have one less thing to worry about later.
13. Love and acceptance
The most important thing is still that you love and accept your child. Everything else is found.
I know that was a lot of information. Give you time to rethink everything. If you want, bookmark this page and come back later. Read a small part again and again, think about the advice, and form your own opinion.
If you have an autistic child, you will learn something new every day and it will change your perspective. And every time you learn something helpful, your child benefits.
Last edited on January 10th, 2019.
Linus has been dealing with autism since 2002. He wrote his master’s thesis on this topic, worked for several years for autism organizations and founded autism culture in 2007 with the aim of bringing current research results and autistic experiences together and translating them into understandable practical guides. Linus is autistic himself and a father.
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