Letter from adults with ASD to parents of children with autism

Dear Parents,

We are adults on the autism spectrum, and we used to be children and teenagers. With time we understood our uniqueness and learned what helped and what hindered us in life. We are people first, autistic – second. Some of us are parents, so we understand very well that your child’s diagnosis pushes you to search for answers: “what now?”, “where do I find hope?”

It’s a sad state of affairs how hard it is nowadays to tell truth from manipulation, deception and merciless exploitation of your concern and anxiety about your children’s well-being. We feel a great deal of empathy towards any child on the autism spectrum and we’d like to share some remarks. While some of them may be hard to accept, they might save you and your children much needless suffering. The following opinions are by those most involved in autism: the people living with autism from the day they were born.

Dear Parent, the few facts we’d like to share are by no means exhaustive. Nevertheless, should you decide to accept them, you’ll give your child a real chance for a happy childhood and safe, fruitful development.

1. Autism is not an illness. It can’t be cured, just like you can’t cure left-handedness. Should you try to cure your child’s autism, you’ll teach them they’re defective, forcing them to carry that burden for their whole life. By seeking a cure for autism you’ll waste your money buying nothing but false hopes, sold by those willing to shamelessly exploit every parent’s love towards their child. Truth is that 100% of people claiming to hold a cure for autism are either charlatans, or their victims trying to justify their own actions.

2. Don’t wait. If you see your child developing differently, don’t hesitate to contact a professional. Don’t let others convince you to “wait and see if it gets better”. The sooner you learn to understand and respond to your autistic child’s unique needs, the better for them. In many cases getting an early diagnosis and proper support are crucial for your child’s development, happiness, and independence later in life.

3. A child with autism needs to feel accepted. Lack of acceptance will bring tremendous suffering upon your child. Being an autism parent is by no means easy, so don’t hesitate to reach out to therapists and professionals should you ever need such aid. A happy, accepting and strong parent is a godsend for a child on the spectrum. Teach your child that taking care of one’s emotional well-being is important. Would you like them to undergo therapy? Lead by example. Show your child that it’s okay to reach out to other people for support. Without acceptance, all your effort may be lost.

4. Vaccines do not cause autism. By not vaccinating your children you subject them to a grave danger. Whoever claims otherwise is either a liar or a victim of a lie.

5. Diets supposed to “cure autism” are complete nonsense. Let your child eat whatever they prefer at any given moment in life; given a chance to develop their senses, your child will learn to eat more, tastier and healthier. Even though children with autism do sometimes have stricter dietary requirements, those are not caused by autism. Just like autism can coexist with myopia, it can also coexist with gastrointestinal disorders. Those disorders, however, are not a cause of autism, and autism won’t disappear when a diet is introduced.

6. People with autism often require support and therapy. Support should encompass learning to communicate effectively, including alternative communication methods in case of non-verbal persons, social skills training, as well as sensory supervision. Even though some people on autism spectrum have trouble speaking, they too can learn to communicate successfully. The sooner you’ll give your child access to augmentative and/or alternative communication, the greater their chance to develop proper speech, intelligence and emotional awareness. Therapy, on the other hand, should be introduced when the delicate autistic mind receives too many scars and traumas. Therapy helps dealing with oneself and one’s environment, as well as building relationships. It should have clearly defined goals that are understood and accepted by your child.

7. Every single of your child’s behaviours is an important message for you. By fighting undesired behaviours you shut their mouth; forbid them from expressing their emotions. You suppress and destroy them. If you ignore the causes behind your child’s problematic behaviour, you ignore your child’s needs as well. Should you attempt to extinguish those behaviours through conditioning, you’ll lose your child’s humanity forever. Don’t train; support instead. Teach yourself and your child to understand the reasons behind their actions. Behavioral training causes irreparable damage in children with autism.

8. Autism spectrum includes all kind of people. There are people with intellectual disability and autism. Blind and deaf people with autism. People with Down Syndrome and autism, with cerebral palsy, genetic abnormalities and other disorders. Each and every one of those people deserve regard and consideration of their specific needs related to their development on autism spectrum. With all the hardships they face because of their disability, we should do our best to spare them the suffering caused by lack of understanding. Their particular difficulty in understanding social world deserves your extraordinary involvement and support in finding an adequate explanation of their reality. Remember that children with multiple disabilities are especially powerless against forceful or disrespectful influence.

9. Your concern about your child may push you to shut them inside a bubble that prevents them from independent functioning. As a parent you’re entitled to receive help from various sources, but please be wary not to build your life around your child’s autism. Doing so may hinder your child’s growth towards an independent, successful and happy life. Don’t confine and restrict your child in order to make your care of them easier. Let them live their own life and make their own mistakes, the way every human has a right to.

10. Surround your child with the feeling of safety. Don’t let anyone harm them. Oppose any forms of violence, be it in therapy, education, or other parts of life. If something evokes anxiety, pain or fear, it’s not therapeutic; it’s a source of trauma that will haunt your child for years to come. Teach your child to defend themselves against violence. Know that if you teach them that violence is acceptable “for their own good”, they’ll carry that knowledge into adulthood – becoming easy prey for cheaters, crooks and other people using violence for their own means.

A child on the autism spectrum is an exceptional human, whose brain operates differently than most people’s. Autistic minds transcend limitations, create art and inventions, and solve problems beyond reach of neurotypical people. Aid your child in exploring their special interests. Don’t let anyone call those fixations or obsessions; allowing this destroys your child’s self-esteem. Remember that supporting your child’s interests, taking part in them, sharing your child’s joy is more than supporting their development. It’s giving yourself a chance to be a parent to a happy child.

PS. If you’re an adult on the autism spectrum, you can help by sending your signature to: letter@prodeste.pl.

Share this!

[addtoany]

Signed by:

PL mgr Joan Blissett*, terapeuta, oligofrenopedagog, osoba ze spektrum autyzmu
NL mgr Anja Brummer-Para, nauczyciel, osoba z autyzmem, mama autystycznego nastolatka
PL Julian Cichor, uczeń technikum, osoba z autyzmem
PL Joanna Ciemińska, filolog, historyk sztuki, osoba z zespołem Aspergera
PL Adam Datta, artysta plastyk, student, wolontariusz Fundacji Dr Clown, osoba z Zespołem Aspergera
PL Emily the Strange*, osoba z zespołem Aspergera
FI Jan-Mikael Fredriksson, przewodniczący fińskiego stowarzyszenia osób z zespołem Aspergera
NL Kamil Fuchs, Physical Therapist, person with autism, the Netherlands
PL mgr Ewa Furgał, edukatorka antydyskryminacyjna, Fundacja Przestrzeń Kobiet, osoba z zespołem Aspergera
PL Mikołaj Glaza**, uczeń technikum, osoba z zespołem Aspergera, ADHD i zespołem Touretta
PL Katarzyna Gotlin, tłumaczka, osoba z zespołem Aspergera
PL dr Michał T. Handzel OSPPE, ksiądz rzymskokatolicki, historyk filozofii, nauczyciel akademicki, osoba z zespołem Aspergera
PL Dagmara Gorczyńska, psycholog społeczna, redaktor, osoba z zespołem Aspergera
PL Wiktor Grzegorzek**, uczeń Katolickiego Liceum Ogólnokształcącego, osoba z zespołem Aspergera
PL mgr Alicja Hińcza, filozof, polonista, nauczyciel przedszkolny i wczesnoszkolny, certyfikowany pedagog metody montessori, muzyk, mama dziecka z ASD, świeżo zdiagnozowana pod kątem ZA
PL Jakub,* technik informatyk, osoba z zespołem Aspergera
PL Michał Jankowski, naukowiec, nauczyciel akademicki, aspi
PL Adam Lu*, hobbysta – informatyka, matematyka, elektronika, języki obce, osoba z epilepsją i autyzmem
PL dr Joanna Ławicka, pedagog specjalny, osoba z zespołem Aspergera
PL Weronika Ławicka**, przyszła artystka, wolontariuszka, licealistka mieszkająca w internacie, całościowe zaburzenia ze spektrum i ADHD
PL Piotr Łąk, student, honorowy krwiodawca, osoba z Zespołem Aspergera
PL Kacper*, grafik, osoba z zespołem Aspergera
PL Anisa Kacprzak, artysta origami, osoba z Zespołem Aspergera i ADD
PL Kacper Kafel, plastyk i przyszły perfumiarz, aspi
PL Karolina Kalisz, tłumacz medyczny, nauczyciel, psycholog, autystyczna matka dwóch córek – autystycznej i neurotypowej
PL Sebastian Kniaź, uczeń, osoba z zespołem Aspergera
PL dr n. med. Piotr Kowalski*, lekarz, osoba z zespołem Aspergera
PL Małgorzata*, nauczyciel oligofrenopedagog, osoba z zespołem Aspergera
PL Maria*, dr nauk humanistycznych, nauczyciel akademicki, osoba z zespołem Aspergera
PL Iwona Mazur, prezenterka/realizatorka radiowa, kobieta z wysokofunkcjonującym Zespołem Aspergera
PL lic. Weronika Miksza, dziennikarz, student, wolontariusz, osoba z zespolem Aspergera
PL Kosma Moczek, inżynier, wynalazca, fotograf, osoba z zespołem Aspergera.
PL Anna Nowak*, lekarz, osoba z zespołem Aspergera
PL Andrzej Parszuto, przedsiębiorca, informatyk, osoba z zespołem Aspergera
PL Paweł*, muzyk, osoba z zespołem Aspergera
PL Ewa Perłowska, grafik, osoba z zespołem Aspergera
PL Angelika Maria Piątkowska, programistka .net, starsza inspektor BHP, z zespołem Aspergera
PL Karolina Plewińska, grafik, ilustrator, osoba z zespołem Aspergera
NL J.R.D. Plas, osoba z autyzmem z Niderlandów
PL Sławomir*, elektryk, aspie, ojciec syna z zespołem Aspergera
PL mgr Marek Stankiewicz, fotografik, biolog, osoba z zespołem Aspergera
PL Justyna Sujata, tłumacz, osoba z autyzmem
PL mgr Sylwia*, pedagog, osoba z zespołem Aspergera
PL Estera Szymańska, poligraf, masażysta, zdiagnozowana – zespół Aspergera
PL Gustaw Ulman, student, wolontariusz, osoba z zespołem Aspergera, syn osób z zespołem Aspergera
PL Wanda*, kierowca autobusu, osoba z autyzmem
PL Agnieszka Warszawa, informatyk medyczny, osoba z zespołem Aspergera
PL Jan Wesołek, student, osoba z autyzmem
PL Dominika Witczak, podopieczna Środowiskowego Domu Samopomocy, pasjonatka jazdy konnej, osoba z autyzmem
PL Adam Wrzesiński, matematyk, oligofrenopedagog, osoba z zespołem Aspergera
PL Tomasz Zakrzewski, technik informatyk, diagnoza autyzmu dziecięcego
PL Angie Zbrzeźniak, z wyksztalcenia psycholog, z zawodu Specjalista ds. Środków trwałych, kobieta z wysokofunkcjonujacym Zespolem Aspergera

* Some people decided to remain anonymous because of fear of social consequences. By applying the principles contained in our list, you help reduce the discrimination of people on spectrum in society.
** 17 years old.