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عضو مجمع تشخیص مصلحت نظام گفت: جامعه با اوتیسم و مشکلات خانواده این بیماران بیگانه است لذا باید کار رسانه‌ای گسترده برای آشنایی جامعه با این بیماری و کاهش بار مراقبت از این بیماران از دوش خانواده‌هایشان انجام گیرد.
به گزارش روزنامه «صبح امروز» و به نقل از ایرنا علی آقامحمدی سه‌شنبه شب در مراسم اکران فیلم مستند “ساعت به وقت اوتیسم” در مشهد بیان کرد: رسیدگی به بیماران اوتیسم تسهیلات ویژه‌ای نیاز دارد که تامین بخشی از آن باید توسط دولت انجام گیرد اما مراقبت از این بیماران کار دولتی و کارمندی نیست و دولت می‌تواند برخی ساختمانهای خالی در شهر را به مرکزی برای نگهداری از این بیماران اختصاص دهد.
وی ادامه داد: مراقبت از بیماران اوتیسم به تنهایی برای خانواده‌هایشان غیرقابل تحمل است لذا انجمن حمایت از اوتیسم باید مورد توجه و حمایت بیشتری قرار گیرد تا بتواند خانواده‌ها را در مراقبت از این بیماران یاری دهد.
رییس گروه اقتصادی دفتر مقام معظم رهبری گفت: والدین بیماران اوتیسمی رنج بسیار متحمل می‌شوند زیرا از فرزندی به صورت شبانه‌روزی مراقبت می‌کنند که قادر نیست با زبان یا انجام کاری از والدینش تشکر کند یا پاسخ محبت آنان را بدهد، والدین بیماران اوتیسمی بدون هیچ توقع یا انتظاری از فرزندان خود نگهداری می‌کنند.
وی افزود: شاید ویژگی ملت ایران باشد که والدین کودکان اوتیسمی بدون هیچ توقعی و با عشق و علاقه فراوان از فرزندان خود مراقبت می‌کنند و همه زندگیشان را فدای فرزندانشان می‌کنند و حتی نگران هستند که بعد از آنان چه کسی از فرزندشان مراقبت خواهد کرد، اما از خودگذشتگی آنان جایی نمود ندارد.
آقامحمدی با اشاره به مواجهه مردم با بیماران اوتیسمی ادامه داد: آگاهی مردم در زمینه مواجهه با بیماران اوتیسمی نیاز به آموزش دارد.
وی گفت: باید روز یا هفته‌ای به نام اوتیسم نامگذاری شود، انسانهای نیکوکار در این عرصه معرفی شوند و شبکه فعال در فضای مجازی به طور مستمر آموزش‌های لازم را برای شناخت جامعه نسبت به این بیماران ارایه دهد.
خلاء قانونی در مورد بیماران اوتیسم
مدیرعامل انجمن اوتیسم ایران نیز در این مراسم گفت: براساس آمار جهانی از هر ۵۹ تولد یک نفر مبتلا به اوتیسم است و با تولد هر فرزند مبتلا به اوتیسم خانواده‌ای به شدت درگیر مشکلات مراقبت از او می‌شود.
سعیده صالح غفاری افزود: بیماری اوتیسم به قدری فشارهای روحی و روانی و جسمی به خانواده وارد می‌کند که به شدت مشهود است و ما از شناخت و رسیدگی بهنگام در مورد بیماران اوتیسم غافل هستیم.
وی ادامه داد: قوانین شرایط زندگی را برای بیماران مبتلا به اوتیسم دشوار کرده است، حضانت، ارث، نفقه، بیمه از کار افتادگی، خدمت سربازی و بسیاری از قوانین دیگر به شکل پیچیده و دشوار بیماران مبتلا به اوتیسم را درگیر کرده است.
مدیرعامل انجمن اوتیسم با تاکید بر بازتعریف قوانین برای بیماران مبتلا به اوتیسم گفت: به عنوان مثال فرد مبتلا به اوتیسم چگونه می‌تواند خدمت سربازی را بگذراند، این بیمار درکی از خطرات مختلف در جامعه ندارد و فرستادن وی به خدمت سربازی همه زحمات والدین و مربیان را برای متعادل نگه داشتن وضعیت روحی این بیمار بر باد می‌دهد.
وی افزود: در ارتباط با بیماران مبتلا به اوتیسم یا خلاء قانونی داریم یا قوانین متناسب با شرایط آنان تدوین نشده است لذا باید در این زمینه تدبیری اندیشیده شود.
صالح غفاری تعداد مراکز نگهداری و مدارس مخصوص بیماران اوتیسم در خراسان رضوی را نسبت به سایر کشور مطلوب دانست و ادامه داد: این استان در این زمینه پیشرو بوده اما تعداد مراکز و مدارس آن کافی نیست، باید در هر شهر دستکم پنج مرکز جامع توانبخشی اوتیسم ایجاد شود و مدارس ویژه بیماران اوتیسم افزایش یابد.
وی گفت: از رسانه ملی و همه تبلیغات شهری و هر محتوای رسانه‌ای که بتواند بیماران اوتیسمی را به جامعه بیشتر بشناساند و به این انجمن در نگهداری از این بیماران کمک کند، استقبال می‌کنیم.
لزوم ایجاد اماکن عمومی ویژه بیماران اوتیسم
رییس کمیسیون فرهنگی، اجتماعی شورای اسلامی شهر مشهد نیز در این مراسم گفت: مهمترین مشکل خانواده‌های درگیر با بیماری اوتیسم، بیگانه بودن جامعه با این بیماری و عدم آگاهی مردم از آن است.
احسان اصولی افزود: مهمترین کاری که می‌توان برای بیماران اوتیسمی انجام داد، آگاهی شهروندان از این اختلال روانی یا بیماری اوتیسم است و باید مکانی خارج از خانه در شهر ایجاد کرد تا افراد مبتلا به اوتیسم و خانواده‌های آنان بدون نگرانی نسبت به نگاه‌های گزنده بتوانند آسایش داشته باشند.
وی با تاکید بر همکاری نیکوکاران در ایجاد مکان عمومی ویژه بیماران اوتیسم اظهار امیدواری کرد این مراسم سرآغازی برای کمک خیران در آگاهی جامعه نسبت به بیماری اوتیسم و ایجاد مراکز ویژه آنان باشد.
نویسنده و کارگردان فیلم مستند “ساعت به وقت اوتیسم” نیز در این مراسم گفت: دومین فرزند من مبتلا به اوتیسم است و خیلی دیر متوجه بیماری او شدم و نتوانستم به موقع نسبت به درمان او اقدام کنم.
بیژن همدرسی افزود: فیلم “ساعت به وقت اوتیسم” با هدف انعکاس درددلهای خانواده‌های دارای بیماران اوتیسم در سال ۱۳۹۵ ساخته شده و سه مرحله از مواجهه خانواده‌ها با بیماران اوتیسم شامل روبرو شدن با بیماری، دنبال کردن موضوع و شناخت از اوتیسم، آرزوها و امیدهای خانواده‌ها را به نمایش می‌گذارد.
وی ادامه داد: این فیلم محصول شجاعت خانواده‌های دارای فرزندان مبتلا به اوتیسم است که در مقابل دوربین قرار گرفتند و درددلهای خود را با جامعه درمیان گذاشتند.
بیماری اوتیسم یا “درخودماندگی” نوعی اختلال رشدی از نظر روابط اجتماعی است که با رفتارهای ارتباطی و کلامی غیرطبیعی مشخص می‌شود. فرد مبتلا به اوتیسم قادر به تکلم نبوده و نمی‌تواند با دنیای خارج ارتباط برقرار کند.
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