10 sätt att hjälpa en familj som ”drabbats” av autism

Via facebook blev jag tipsad om en artikel på Psycology Today om hur man kan vara som vän till en familj som har ett barn med autism. Det är en hel artikel med 10 punkter. Jag länkar till den här, men jag kan inte låtabli att kopiera in punkterna här, ifall det finns läsare här, som precis som jag tänker, ”jag gör det sen” och det sen inte blir av…

Även om vi ännu inte har påbörjat Prinsessans utredning (troligen april), känner jag och mannen oss tämligen säkra på att något däri är det, eftersom asperger (och kanske även ADD) tillhör autismspektrumtillstånd. Och skulle det visa sig vara någon annan funktionsnedsättning eller problematik så känns ändå dessa punkter väldigt passande för där vi står idag.

Jag skriver ner mina egna tankar o slutet av inlägget.

Här kommer listan:

1. Being There

It sounds easy enough, but parents of children with autism need someone to listen and ask how they are doing. As a friend, you may not understand all the autism jargon, but moms and dads who have kids with autism often want to talk about their kids.

What can happen, however, is that the diagnosis of autism pushes us and our kids into isolation. It isn’t like we want to be isolated, but we are sometimes so busy with autism related activities and therapy, it does not leave much time for anything else. Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her autism bubble and combat the isolation.

2. Discussing Autism

To talk about autism or to not to talk about autism?…That is the question. The answer is ”It depends.” Most parents who have kids on the spectrum are more than willing to talk about autism. But there are parents who do not want to disclose the diagnosis, talk about autism at all or how it affects their child. Some parents may be in denial about the diagnosis and will not even want to say the ”A” word let alone discuss the topic.

So if you are a friend, what do you do? Let your friend bring up the topic of autism, and do ask how the child is doing. Even if a friend does not use the ”A” word, he/she will appreciate you asking how their child is doing in general… without ever discussing autism.  If your friend is open about the diagnosis, showing interest in their child and the topic of autism is certainly appropriate. Because we never take progress for granted, parents who have kids with special needs are proud of their children’s smallest accomplishments. To know that friends care about our kids makes sharing these times all the more special.

3. What Does a Child With Autism Look Like?

Seems like a strange question. But I know that there have been times when a person has met my son and then makes a comment such as, ”He doesn’t seem like he has autism.” or ”He doesn’t look like he has autism.” The interesting thing is that there is no ”look” to autism. Yes, some of our kids may have similar behavioral or social characteristics, but they are all very different. So this is why if someone tells me they have experience in autism, that doesn’t mean they will know or understand my child.

If you do know, watch or teach another child with autism, it is best not to compare what you know to the child you are meeting. Also, I would refrain from telling your friend about how you think autism should ”look”. Being open to learning the hallmarks of autism is important, but learning about the individuality of each child who has autism is the best approach.

Sometimes it is a difficult concept to explain to others how autism is different in each child. But as a parent, when your child has 10 friends withAspergers, you can see easily how they are all very unique with their own talents and interests.

4. Prognosis
If you had asked me when Tyler was diagnosed at age 2 where he would be in 12 years, I could not have told you or predicted the outcome…nor could the doctors. Many times people will ask us, ”What the prognosis?”, ”Will he grow out of the autism?” or ”Will he go to college?” The truth for many of us is that we don’t know our child’s prognosis, and the topic can be a sensitive subject. Because we don’t know what will happen, the future can be a scary, unknown.

Unlike parents of typical children, who plan for college or vocational schooling, we often do not know where our kids will be academically, socially or behaviorally when they become young adults. Can we plan for the future? Yes, but we go into it accepting the unknown variables as we plan. Our child’s future may or may not include college or further schooling. We often don’t know whether our child will ever be independent enough to live on their own. We hope for independence, but the reality for the future may include living at a group home or our child may need to live with us for the rest of our lives.

Many of us worry about what would happen to our child if something happened to us. This too, is difficult. So, if your friend brings up the topic of prognosis, then you should discuss it. But just be aware that some parents will not want to talk about this issue.

5. Information
Lately there has been a lot of autism awareness stories in the news. As a parent of a child with autism, I do appreciate friends and family sending me information they read. If you have a friend who is open about discussing autism, sending something you read is a fine way to show you care. Just because we have a child with autism does not mean we necessarily know every latest thing that is going on in the autism world.

The only caveat I would mention in this area is that parents don’t always agree about autism treatments or causes. As a result, parents sometimes react strongly to studies, articles, etc.. So my advise would be to go easy. If a friend seems receptive to new information, feel free to send it but never push too hard.

6. Playdates with Friends

I can remember when my son was first diagnosed, and my friends also had children Tyler’s age. What my son really needed was to be around other typical children. However, some friends acted like somehow autism was contagious and did not want their child playing with mine. I can remember a good friend’s husband expressing his displeasure with my son and his autism. After that, I never went out of my way to get our kids together, because I felt her husband didn’t want my son around her children. It was a rude awakening about how some people accept our kids and some people clearly do not.

So what can you do? If you have a friend who has a child with autism, invite her and her kids over for play time. Will it be typical playdate? Maybe yes…maybe no depending on the children. Even if the playdate is a little out of the ordinary, it will offer the kids with autism an opportunity to learn typical social behaviors/skills from other children. For the typical kids, the playdate may provide a lesson in acceptance and tolerance of people who are different from them. Acceptance is a lesson that is learned best by doing, so your children will benefit as well. It can be of great experience for both families.

7. Playdates with Neighbors
When it comes to autism, being a good neighbor means more than keeping your yard clean and sharing a cup of sugar. If you have a child the same age as your neighbor’s, invite them over for playtime. You may want to invite the parent and the child over for the playdate so you can learn how the autism affects individual child and how to help the kids play together.

It is important to note that many children with autism have difficulty creating and maintaining friendships, engaging in conversation and/or working within a group of children. This means that you may need to help facilitate the friendship and communication between your child and the child with autism. Also, many of our kids do better within a structured environment. Creating a well organized playdate with specific activities may help both kids enjoy their time together.

8. Help with Respite
Whether the child is a toddler, adolescent or adult with autism, respite is often a complicated issue for parents. Many parents who have children with disabilities are overwhelmed with the day to day responsibilities. Some children on the spectrum do notsleep well during the night and that further adds to the exhaustion.However, when you have a child with special needs; it can be difficult to find someone you trust to watch your child. For example, I could easily find a teen babysitter in our neighborhood to watch my 4 years old, neurotypical daughter. But when my son with autism was her age, there was no way an untrained teenager would have been able to babysit him. My son only spoke a few words at the time and had many behavioral issues, so I only could trust my parents or another adult to watch him..

So what does this mean if you are a friend or family member? An offer to provide brief respite from a trusted friend or family member who knows how to appropriately interact with the child with autism would be great. Whether it be one hour or a night, any offer would be a gift for a friend in need. It seems like a simple favor, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.

9. Don’t Judge
Whether it is a disapproving stare in a grocery store or comments from a family member about how we need to ”better discipline our child”, most parents who have a child with autism been subject to judgment from others. Considering that we live our life in a fishbowl, with countless therapists in our home and never ending doctors appointments, we often grow weary of ”advice” from those who do not have a child with autism. No matter how much you think your criticism is constructive, be aware that expressing it may easily break off or damage your relationship.

Until you walk a mile in our shoes, you will never know what is like to have a child with autism. Most of us instinctively know that we should not judge others, but it can happen easily. And once it happens, it may be hard to reverse the damage.

10. Confidentiality
Some parents, like me, are very open about talking about their children and the diagnosis. But some parents may not want to discuss autism except perhaps with a close friend or family member. And on the far end of the acceptance scale, some parents may be in denial about the diagnosis and won’t discuss the issue with anyone.

But regardless of how much we discuss our kids or autism, we do expect confidentiality. Just because we open up to a friend does not mean we want our friends or family telling others about our children or any issues we are having at the moment. Confidentiality is especially important to a parent who has chosen not to disclose their child’s diagnosis to others . While it seems like common sense not to gossip about other people’s children, it is worth mentioning that if we tell you something, please keep it in confidence unless you have the permission of the parent to share this information with others.

Läs hela hennes (Kymberly Grosso) artikel med både förord och slutsats här.

 

Om du har läst ända hit vill jag tacka dig för att du bryr dig om . Att du har någon du tänker på, som harbarn med autism, eller att du själv vill hitta svaren på hur du tycker det är skönt att bli bemött. Kanske för att själv få verktyg för att tipsa en vän. Länka gärna om du vill. Eller om du bara vill tipsa vidare om hemsidan Psycology Today, så går det också bra, såklart.

Personligen stämmer det mycket väl in på mina egna känslor och tankar i den situation vi är i just nu. Jag känner mig väldigt asocial, men det innebär egentligen inte att jag inte vill prata. Jag vet bara inte vad jag ska säga till vänner som jag inte träffar så ofta. Grannarna, som vi träffar mycket under utetiden, har vi inte pratat med, eftersom vi inte vet vad vi ska säga, och om det egentligen är nödvändigt. Plus att vi inte heller har träffats särskilt mycket under den jobbiga tiden som varit sen oktober/november fram till nu.

Jag känner också att jag stänger in mig mer och mer, just för att jag inte orkar prata om hur det är. Trots att behovet av att få skrika ut min frustration och sorg är enorm. Jag får för mig att de som finns runtomkring oss har åsikter om varför vi aldrig är ute  dagarna, att andra ska tycka att vi är lata, för att vi aldrig hittar på något. Men det finns aldrig tid eller energi över till att planera något i förväg. Samtidigt som att om vi inte i förväg har planerat in en lekdate för Prinsessan så kommer vi ingenstans.

Som jag skrev för ett par dagar sen känner jag mg orolig för hur våren och sommaren ska bli. Kommer hon funka ihop med de tjejer som är så tajta som finns på gården? De har lekt mycket förut, men mycket har hänt sen dess. Kommer vi kunna hitta andra att leka med så hon får sin kompisdos fylld? Och när kommer vi kunna komma igång och få träna med henne så hon kan bli lite mer flexibel än hon är idag?

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